Ben Brian - Lung Transplant Recipient

Hello Ross

2008-10-04T17:12:00.002+10:00

I can't believe it is almost 12 months since my last post.

I really have let it slide but an email from Ross, a wonderful nurse in The Intensive Care Unit at the Prince Charles Hospital, prompted me to revisit the site.

Like most of the ICU staff, Ross was a very caring and dedicated nurse but had one feature that the others may not have had, she is a great cook. I really couldn't stand hospital food (although it has improved dramatically of late) so one day Ross cooked me up an Indian dish the name of which I have forgotten. Anyway it was mildly spicy but very good and she'd made so much that Janyne took the rest home. Thank you Ross for your email and for remembering Janyne and me.

There is one point where I need to correct you however. My transplant was 4th May 2006, a whole two years and five months ago and I am feeling better than I have in over six years. I have put on a lot of weight (94 kilos) but that is only because I am not exercising as much as I should and I am probably drinking a few too many wines or scotches. Anyway, my excuse is that I am living on borrowed time so I might as well enjoy myself. I keep saying I must diet and exercise more but it's always tomorrow.

Healthwise I am fine except for the odd infection and a bit of fungal growth now and then. With the share market slide knocking us around financially, Janyne is now working full time and has me out looking for work. If anyone wants to employ a double lung transplantee who has shingles, osteoporosis, an artificial left hip and probably polimyalga rheumatica (but I haven't been off prednisone lung enough to find out), please let me know.

I am reasonably computer literate, can write well, understand sales and marketing, and don't mind working for commission but a retainer would be nice.

Hard to update a year's experiences in one post but I guess a highlight is Jacqui's upcoming marriage to her long term Partner, Andrew, on Friday 10th October. She and Janyne have been planning this event for at least a year, well maybe a bit less, so everything should go well. Another highlight is that Janyne's son and my stepson, Jason, and his partner Kym had a beautiful daughter, Hayley Janyne Gardener, last May, Janyne's first grandchild and she is ecstatic. One sore point is that she (Janyne) wants to be called "Granny". God she's not even 60 yet. I'll probably get called Grandpa Ben but I'd prefer just "Ben".

Anyway she, Hayley that is, is an absolute delight and it's wonderful watching her change and grow from week to week.

I'll leave things there but will try to update this blog at least monthly, if there is anyone still out there apart from Ross. Again thank you Ross.

Until next time,

Cheers,

Ben

He's back

2007-10-14T20:15:00.000+10:00

Hello everyone,

Just wanted to let you all know that I am still very much alive despite a few setbacks in recent times. I had decided that I would keep this Blog going on a monthly basis but I just looked at the clock and found it's been three months! No wonder I'm getting comments and emails.

I am not going to go on and on about my health issues. In fact I would need Janyne's input because I can't remember times and dates of all the hospital stays and clinic visits. Suffice to say that I have had bronchitis, pneumonia, and, more recently, a lung infection. To top things off, the hard drive on my laptop died just ten days before the expiry of the warranty period. (at least something went right).

The worst of this was that I had lost all of my data, email addresses, documents going back to the early nineties, financial records, photos, everything. Back-up? What's that? And only two weeks earlier I had asked Janyne if she had backed up the files on her computer. Talk about practising what I preach!

The computer repairman said he could send my old hard drive to Melbourne to see if they (HP) could recover some of the files but the minimum cost would be around $1,800 and with no guarantees.

So fortunately I have all the important paperwork on file just not in my laptop. The hard part is reconstructing my email address book. It is going to take a bit of time to fix that. Of course I could just wait for everyone to email me and file the sender's address in my address book!

On a sad note, one of our friends and a fellow transplantee passed away on the 3rd October, just short of five years since his single lung transplant. He had been ill for some time with issues probably more related to his medication than his lungs but eventually his body (and lung) couldn't cope with any more and it gave up. Only two weeks earlier I saw him in hospital whilst I was waiting for a CT scan when he was wheeled in before me with a gaggle of medicos from the ICU, tubes and drips everywhere. He recognised me and said hello and I responded with, "I'll catch you later". I couldn't visit him until he came out of ICU but did so on the Friday of my discharge as he had been transferred to a ward. I knew then that when I shook his hand and held his shoulder as one would when greeting a friend, it would be the last time I would see him.

He was only 52.

We all know that a lung transplant is not a cure, it simply prolongs life, but this incident, so close to us personally, really brought home the fact that we transplantees are here for a good time rather than a long time so make the best of it. Unfortunately most of us still need to concern ourselves with mundane matters such as worries about finances, concerns about our loved ones, family issues and the day to day activities that are simply a part of life. But we also need to work on the priorities and categorise those things about life that are most important to us.

So I'll leave it for now but I will be in touch again soon to provide all the nitty gritty about what's been happening over the past months.

Until then, goodbye.

Ben

Told you so!

2007-07-11T16:38:00.000+10:00

Despite all the good intentions, it has taken me more than a week to update this blog. Have to admit I was pretty busy. Managed to do a bit of work for Great Southern, finally got that $3,000 Government Grant for the Lung Transplant Support Group Inc. from the Dept. of Health, (Thank you Minister Stephen Robertson), drafted a letter and membership application to all lung transplantees, which have been printed and will go out tomorrow, and I can't think what else. We're also seeking nominations for the Committee. So life continues to be good.

Great Southern shares have been falling back lately due to lack of any further announcements regarding possible takeover bids so the punters are thinking it's all over; yet rumours persist that there is still some due diligence activity going on in Perth. Well who knows? Hopefully we'll get a clearer picture in ensuing weeks.

Health wise I am feeling better than I have for a long time. Shingles persist but either I am getting used to the pain, the drugs I'm taking are working, or a bit of both. My clinic visit to the Prince Charles Hospital went well. The only concern Dr. Peter Hopkins continues to have is that my kidney function is not what it should be due to the immunosuppressants that I'm taking. He is concerned that, over time (I think he said five years) this could become a serious problem. So apart from balancing drugs such as Mycophenolate, Tacrolimus etc., I am to take in more liquids (plenty of Chardonnay, Semillion, Cabernet Merlot and Johnnie Walker) well, I think he really meant water, tea etc. although he didn't specify. But seriously, let's hope we can improve the kidney function before trouble raises its ugly head.

Winter is always a difficult time for transplantees because of the higher risks associated with contact with people who have colds and flus. It is equally difficult to tell family and friends of the higher risks of infection we face if they come to visit whilst ill with a cold or whatever. It seems almost rude to say, "please don't come" but it is very necessary. A simple cold could lead to pneumonia in a transplantee due to the very low resistance caused by immunosuppressanets even if one has had a double dose of flu injections like I have had. So I feel the best advice is to explain the situation honestly and hope they understand. If they are offended, too bad. The risk of serious illness and even death outweighs the niceties we would normally adopt.

Well with those words of wisdom, I'll go away until next time. Stay well and remember, "Nothing is ever as bad as it seems".

Bye, bye,

Ben

Times are good?

2007-06-24T13:20:00.000+10:00

It is not really 24th June is it? Where did the month go?

For me it was/is a pretty good one. The pain from my shingles is starting to ease or I am just getting used to it, or both. The worst part is that I suffer from terrible ear aches from time to time and night time and early mornings seem to be the worst. Apparently this can go on for months

We fixed the lethargy I spoke about last time with a couple of bags of blood during my clinic session on 5th June. It seems some of the drugs I am on are causing anaemia. Lung function was great and continues to be. I am putting on a bit of weight and trying to keep around the 80 kilos mark so I have to say that if the rest of my 61st year continues this way, I'll be very happy.

On 12th June Great Southern Limited (ASX code GTP)announced that it had received an approach from a party expressing interest "in the future ownership of the company". Whilst nothing is certain, this announcement has raised much speculation. The share price had already been rising slowly from $1.98 on 20th April to $2.65 on the date of the announcement (Just how does the market know that a takeover bid might be in the wings? Or was it just a coincidence?) Anyway, since then we've seen the price improve to $2.94 so you can imagine, we're pretty happy at present. There's still no further word on what's happening on that front but speculation continues to run high. Hope the share price keeps going. We're still a long way from it's price just a year ago of around $4.00 but who knows what a prospective buyer of the company might pay?. It's all rather exciting.

At the same time there is the usual run to the end of the financial year for people to get their tax deductions. Great Southern's Non-Forestry projects closed on 15th June, but the High Value Timber and Plantations 2007 projects are officially open until June 30th so you can imagine that there is a lot of activity and nervousness around there at the moment. My daughter Jacqui effectively took over my role at Great Southern since I became too ill to work in 2005 and she is reacting exactly the same way as I did at this time of year. "Will I achieve my yearly target, and my bonus, or not?" As usual, much of the business will come in this last week so I don't think she need worry too much. We'll see.

On my own this fine Sunday afternoon. Janyne's gone up to Brisbane to go see a film with Jacqui and I'm here with Cindy who's sound asleep and snoring, do you believe, in her "bed" on the floor nearby. She's a delightful, intelligent, and often mischievous little dog, but we are both so glad to have her. I might take her for a ride in the Golf Buggy around the Hope Island estate later, before it gets too cold. I haven't seen all the new development of late.

Yes nights here have been very cool, around 8 or 9 degrees, but the last couple of days have been quite pleasant and sunny. It's the westerly winds that we don't like.

Just want say hello to Phil who hasn't been well for some time now but hopefully will be feeling better soon. Also to Rebecca who received some bad news health wise recently. We lung transplantees know what it is like to receive news of a terminal illness but once we accept it, we usuallly learn how to cope with it. For those of us lucky enough to receive a donor lung(s), bad news becomes good news. Remember, I was only one month away from being too ill to undergo a transplant. It just proves, there is always hope.

Bye for now. I'll try to give you an update next week but you know what I'm like.

Ben (and Cindy)

Don't tell me I'm 60, tell me lies instead.

2007-05-31T20:02:00.000+10:00

It is so hard to believe that tomorrow 1st June 2007, I'll turn sixty years old.

I don't feel it. Except when I looked in the mirror today as I was getting a haircut and thought, "gee, you don't look too good". Or when I later sat down on a seat in the shopping centre waiting for Janyne who arrived just it time to hear a passer-by ask me if I was alright because I looked so bad. He happened to be a paramedic. Anyway we gave him an abbreviated version of my recent medical history after which he advised me to take good deep breaths and try to get some colour back in my face.

What a great way to end my fifties.

I haven't updated this blog in a while mainly because I haven't been too well lately. I felt it wasn't appropriate to complain about my state of health on the anniversary of my lung transplant on 4th May.

However, on 25th April, I was diagnosed with shingles. This is NOT a fun disease. It affected me on the left side of my face, from the middle of my scalp to the base of my neck. I went on Valtrex immediately which is a drug commonly used to alleviate the symptoms of shingles. Some time into the disease I began to have episodes of the most excruciating pain I have ever known. They would last for anything from 1.5 minutes up to 3 minutes. It was like someone pouring boiling hot liquid over the left side of my face and left me literally screaming and crying like a baby. It would strike without notice and a few of my friends who may have been visiting at the time simply couldn't believe such pain. Fortunately I finally had enough and I asked Dr Hopkins if there was anything I could take to stop them. After consulting a colleague, he prescribed a drug which is normally used as an anti depressant and after taking this for a couple of days the pain spasms disappeared, thank god.

I have to admit that this is the first time, since I was diagnosed with Lung disease in April 2002, that I asked the question, "what have I done to deserve this?". So again you see, a lung transplant is not a cure, but it is an opportunity to live a better quality of life then would have been the case. If we hadn't taken the offer of a set of lungs in May last year, I am certain I would not be here today. So what ever life throws at you, face the next day with confidence and enthusiasm. You'll be amazed at the result.

Oh by the way, on 5th May I was, and had been for a few days, suffering from severe diarrhoea. I phoned Dr Hopkins and he advised a few days in hospital to receive intravenous fluids and see what could be done about it. So again, a day after celebrating the first anniversary of my lung transplant, I'm back in Hospital. In fact I'm starting to know many of the Doctors and nurses there. Yes, Prince Charles Hospital is indeed a second home.

I am going back to hospital next Monday for a normal clinic session and will ask Dr Hopkins why I am feeling so lethargic but my guess is that it is caused by the cocktail of drugs I'm currently taking. It just amazes me how all these drugs know exactly where or what to attack, particularly when I take a large number at a time.

Anyway it is getting late so I'll finish off now.

Talk again soon,

Regards,

Ben

A Great Anniversary - But let's not forget

2007-05-04T21:29:00.000+10:00

Amazing photo taken by Giorgio Raffaelli.

It has been wonderful to receive all the tributes and well wishes from my family on this, the first anniversary of my lung transplant. Sometimes I think they're speaking about a complete stranger.

But let's not forget that a little over a year ago, someone else's life support was turned off. He/She may already have been brain dead but a difficult decision had to be made. The result of that decision was that a heart stopped beating, lungs stopped breathing, kidneys, the pancreas, liver and gall bladder ceased functioning and a person was laid to rest. For the family who made this decision, this must be a very sad time.

Yet that person, again supported by family, had declared that his or her organs could be made available for transplant and within hours of ceasing to work, many if not all of them were soon functioning inside someone else. In this case, the lungs went to me and who knows how many others have benefited.

I think about the donor family every day and I know others I've met who've received transplants think the same. We think about their sadness. And we're so grateful for their courage in helping others, like me, to have a longer, better quality of life than would have been the case.

To Janyne, all of the comments already made on today's posts say it all. You have been fantastic even though life hasn't been a bed of roses these past years and there will be more challenges ahead. I thank you so much for your love, for caring for me so well under sometimes difficult circumstances. I cannot imagine how others, who don't have a loving spouse or children to support them, manage.

To the rest of my family, I am glad to be sharing tonight with you. We all know that I wouldn't be here but for the transplant. Thank you for your care, compassion, understanding if I get a bit "cranky", and general loving support.

Let's hope we are all together twelve months from now and that the year in between brings everything we hope for.

Ben

Happy One Year Anniversary!

2007-05-04T03:38:00.000+10:00

Amazing photo taken by Thomas Hawk.

Congratulations Dad!!!

Well what to say?

Firstly, WOW! What a year! It’s not a standard thing to be celebrating and to be honest feels a little ‘weird’. The whole experience, this past year, has been not unlike a rollercoaster; lot’s of ups and downs but we’re still here, kicking and screaming, fighting our way through and I’m glad you all came along for the ride!

I started this blog just under a year ago today. Since then, Dad and I have written almost 100 posts, had around 10,000 visits from people all over the world, keeping a journal of everything that’s happened. I haven’t looked back on the past in a while but at some stage today, I will. I’m sure it’ll be a little emotional, maybe even a little scary (and that’s just checking my grammar!) but I’m looking forward to it. So much has happened; I’m glad I made the decision to blog it all in the beginning and I really hope you’ve enjoyed this experience as well.

So today we’re going to try something new. I’m going to open up the blog to the rest of the family. Dad and I came up with the idea a few days ago and since you’ve only ever heard the two of us carrying on from time to time, it’ll be a different perspective to have someone else blog about their thoughts/reflections/experiences over the past year. I’m excited to see what they write!

Starting things off will be Mum (Janyne), then throughout the rest of the day Jax, Mel, Jason & Kym and myself will all write individual posts. Finally Dad (Ben) will finish it up with his personal post as well. [Note: View these below!]

Once again Dad, CONGRATULATIONS on the One Year Anniversary. Wow, how things were a little different a year ago today!

"Life isn't fair. It's just fairer than death, that's all."
- William Goldman

Paul.

One Year On: Janyne (A Time For Reflection)

2007-05-04T03:37:00.000+10:00

Amazing photo taken by Thomas Hawk.

A Time For Reflection

It is hard to believe it is twelve month’s since Ben’s transplant. Time has passed by so quickly.

As each day passes by, I am amazed at Ben’s tolerance and capacity to cope with what he has had to endure over the past year, let alone the previous years since he was diagnosed with Pulmonary Fibrosis and especially the twelve months prior to transplant.

As Peter Hopkins, the Qld Lung Transplant Physician said to both of us recently,

“Transplants aren’t easy”

and we both agreed.

Firstly, without “The Gift of Life” from his Organ Donor he definitely would not be alive today. Secondly, without the expertise of the Transplant Unit, the surgeon John Dunning and the Intensive Care Unit at Prince Charles, Ben would not have survived. One cannot realize what these people do and their dedication level. It is more than a job to them. Thank you to all those involved at The Prince Charles Hospital. I cannot say thank you enough.

Ben is really an inspiration to all of us. His ability to deal with the side of effects of all the medication and the ongoing health problems he has faced and maybe will face in the future. We take each day at a time and try to make the most of what we have.

As Ben tells me constantly, without a transplant the alternative is death.

Since we met some 29 years ago, Ben has always had his goals and dreams. Fortunately, he has been very successful at achieving many of these. His motto is – never give up and nothing is as bad as it seems!! His children have been told this on many occasions over the years. We both hope they will all remember this during their future years and will never give up.

Hopefully, the next twelve months and the immediate ongoing years brings you, Ben, a better quality of life so we can both enjoy what life has to offer, whatever that maybe.

You are always in my thoughts,

I Love You – Janyne

One Year On: Melissa (A Greater Perspective on Life)

2007-05-04T03:36:00.000+10:00

Amazing photo taken by Diana Lemieux.

A Greater Perspective on Life

Well I still can't believe it’s been a year and what a year I must add!!! How that time has just flown, well maybe not for Ben but definitely for me.

I remember getting the call from Jacqui about 5.15pm. I had just turned my mobile on which is very bizarre because I normally wait until I get on the train. She said that Ben had received a call about a possible transplant. That night was the strangest night - sitting there waiting to see whether it was a match and if he would be having it or not. Strangely, I just knew it was going to happen and had to fly to Queensland to be there with the rest of the family.

I got a call from Mum in the early hours of the morning to say it was all going ahead. I called Paul to help make flight reservations and then started packing (this is like 3.30am!!!).

I will never forget arriving at the hospital and going into intensive care, seeing Ben lying there and everything just hit all at once - reality had set in. You hear about it on the phone, but to see it in person is another thing. I realised then what everyone had been going through during these very stressful, awful, times. How I wished I had been there to go thru it with everyone and I felt so bad I hadn't.

I remember while looking at Ben and all those machines (oh those
machines!!) I felt faint and was going to pass out. Mum had to get the nurse and they end up wheeling me out in a wheel chair, into the waiting room, how embarrassing!!! Here Ben is in ICU and I'm passing out!! But it is very common the nurse said. I did give everyone a scare though!!!

After what we all saw and the ups/downs with Ben, how he spent longer in ICU than expected, whether his body would accept the new lungs; it was all just waiting game. You soon get a greater perspective of life and how precise your family/friends are and what you can do for others too.

Because I live in Melbourne it is very hard for me to get up there all the time, but I keep in constant contact with everyone - I honestly don't know how Mum has managed through this last year and the previous years too. She definitely is one in a million and to me hasn't complained at all. I suppose that's what you do when you love that special person in your life.

How has Ben copped with all this, I honestly don’t know but I suppose you do. You get a 2nd chance of life but to go through all of this, on top of the lungs - the surgeries, backwards/forwards to see specialists/hospital, rejections, now shingles, you name it he has had it. What more can go wrong you ask????

Well I now hope the next 12 months things really do pick up and I'm sure they will and he can start to live a much more normal life again. He so deserves all this for everything he has been through. I wish you Ben all the very best for the next year - I think about you all the time and love you heaps. You have always been there for me and given me so much. You’ve treated me like your own daughter. Oh and also given me some stern words but it has made me take a good look at myself and get on with my life too in a positive direction.

Happy One Year Anniversary!

Melissa

One Year On: Jay, Kym & Tylah (As Today Fades..)

2007-05-04T03:35:00.000+10:00

Amazing photo taken by Chris James.

As Today Fades

Dear Ben,

As today fades this may just be an ordinary day for most but for us it’s been twelve months since the Angel in Heaven gave you your second chance and ours. We are sure that you wake everyday and thank silently the Angel and the family for their wonderful gift, we also thank them silently.

What a time it has been for you over the last year, no not really just the last year but for the entire time that you were not well before the transplant. During this time, Jay and I have never heard you complain about anything (but I’m sure that someone has! ha ha), you have been dealt some pretty tuff ups and downs along the way but you have always taken on board any obstacles in a positive and admiring manor.

After visiting you in the hospital immediately after the transplant it wasn’t until then that did we realise what you had endured. Your strength during this time was amazing, your courage and determination unbelievable, your will to survive was truly inspirational.

We are sure that without the support of your loving wife (Mum) things would have been a lot harder. We would like to thank her for being the most caring, loving, unselfish person that we know. We thank her for being there for us in the hard times, we thank her for loving you the way she does.

We are sure that you have set some of your own milestones, not that each day isn’t a bonus, but we want you to share some of ours with us.

2007 secret Santa, and maybe we might have to up the anti on the limit?
Our marriage next year in LasVegas (your shout for a drink at the Caesar’s Palace)
Both of us losing 20kg
Tylah completing high school
Tylah obtaining her drivers license, (she’s keen for a spin in the Porsche)
Jay turning 4 (p.s Kym turning 50)
And anything else that might happen along the way! (no more grandkids from this union that’s for sure!!)

Here’s to one year up and plenty more to come. We love you.

Jay , Kym and Tylah

One Year On: Jacqui ("Dad, I love you Dearly")

2007-05-04T03:34:00.000+10:00

"Dad, I love you Dearly" - Jax

A year and one day ago I was leaving my last appointment for the day and checking my messages on my mobile phone. There was one from Mum and she sounded rather panicked. This isn’t unusual for her. She tends to leave messages in a certain tone of voice that makes you think something is wrong. I rang back immediately and she said Dad had received “the call”. The long anticipated “call”. I couldn’t believe it was actually happening. I thought I was dreaming. Those of you who know me well, know that I experience very vivid dreams and anything could happen in them. But this was the real deal. I met Mum and Dad at The Prince Charles Hospital. And you pretty much know the story from there. I swear it was the longest night of my life. Dad was very calm cool and collected throughout the entire night. Even through a time like this Dad kept his composure as the man of the family and he had to ensure that his family was happy and safe.

Dad is a very selfless man. Throughout his sickness he always put us first and worried more about us then himself. Remembering back I was crushed to see my Father so helpless. It pained me to see him struggle trying to walk a short walk from the bedroom to the kitchen table. Even though he was on oxygen the grasping for air was intense. And to see him pretty much a brand new man today is more than a miracle.

I was very impressed with the hospital staff – Surgeons, Doctors, Nurses and Administration. If it wasn’t for these people Dad wouldn’t be here today. We are very lucky that there are such devoted people in this world. As they wheeled Dad down the hallway to theatre I said to Mum this is just like on the movies. It seemed surreal. Mum chuckled at me. When recently watching the Ultimate Donation it brought me back to this time. Seeing Dad lying there on life support he looked peaceful. I certainly wasn’t prepared for the road ahead. And for Dad it was a rough and bumpy road ahead. You didn’t know what to expect and Dad made the journey and eventful one. He is a fighter and a determined man.

I must admit even though Dad does not complain he can get a little shall we say “cranky” at times. At least he does not get as cranky or more to the truth angry as he did before the transplant. I recall one day when we were working together. Dad was exiting the elevator I was about to enter. He was abusing this poor old man that looked about 80. I was horrified. It is probably the first time in my life (and hopefully the last) I pretended I didn’t know him. There are many other episodes but I won’t go into those. But as the doctors always say, the drugs cause his mood changes. We just need to ensure we aren’t in the firing line.

Fortunately we are a very close family. My Mother is the most amazingly brilliant dedicated woman I have ever met. In the last 2 years Mum gave all she had to Dad. She was not only a rock for Dad but also for all of my siblings. I wish I could grow up to be half the woman she is. I saw Paul grow up very quickly into a fine young man. He took over as the head of the family. He surely knew exactly what was happening at every stage of Dad’s stay in hospital and kept us fully informed. Dad if you had seen him you would have been very proud. Melissa gave me a fright. I remember when she arrived and Mum took her into ICU to see Dad. Jay and I were in the waiting room. Mum walked in with this dreadful look on her face. We were asking if Dad was ok. Did something happen to him? She finally got it out that it wasn’t Dad it was Melissa. Mel nearly passed out. We probably shouldn’t have laughed at her but I felt we needed a good laugh at an emotional time like this. It is amazing how you can all pull together when needed the most.

Here we are a year on. Dad is still here and all thanks to one very generous person that gave him the gift of life and it truly is the ultimate donation. I hate to think of what our lives would now be like without having his opportunity.

Dad has always lived by the philosophy that nothing is as bad as it seems. And you know what, he is exactly right. You need to be focused on what you want to achieve. And when you feel down and miserable you need to pick yourself up, dust your self off and soldier on. You are only here for a short time so make sure it is a damn good great time.

Dad I love you dearly and if there were more men in the world like you it would be far superior place to live.

Happy 1st Anniversary!

Love Jax!

One Year On: Paul (Go get em' Tiger!)

2007-05-04T03:33:00.000+10:00

Go get em' Tiger!

I remember getting the phone call from Mum that afternoon. I was at work, just about to finish up for the day. As Jax said earlier, Mum had a tendency to start off a conversation or message and sound as though something was wrong, probably due to being on edge at that time! When I answered the phone I knew this call was different, I knew from the panic in her voice that it was either ‘the call’ we’d all been waiting for or something else was drastically wrong. Fortunately it was ‘the call’.

That situation panned out totally different then I had rehearsed it. Because I lived and worked closest to Mum and Dad, I knew I’d be involved in the process somehow. I’d prepared myself for it since Dad got on the transplant list. I knew Mum would be a wreck, all panicky and I’d man-up and be the rock, the cool calm collected guy that had everything under control; much like Dad would have been. I even decided not to drink over Easter so that I could drive, just in case we got that call. When the call came though, it was a different story.

I’d had a cold that week and since I didn’t want to infect Dad, hadn’t been over to see him in a couple of days. When I got the call from Mum, I still had the cold which meant no going along to the hospital for me. That was a hard thing to deal with. I knew that the transplant would be successful but in the case it wasn’t, well Dad would die and I wouldn’t have been there beforehand to say goodbye. The solution was simple though, Dad just wasn’t allowed to die. I’m still amazed at how calm you sounded on the phone the last time I spoke to you pre-transplant.

So here we are a year on and as you know Dad didn’t die, the transplant was successful and even though we’ve had ups and downs (just a few), it’s been amazing to see my Dad back again. Not the sick Dad, who each time I saw him, kept deteriorating; the new Dad, the one with the second chance who everyday I saw post transplant (I wasn’t only there for the hot dinners!) was getting better! To see that ‘life’ back inside of him is overwhelming. I never knew you could feel so much for someone.

I’d never lost anything I was close to in my life before. I didn’t understand ‘death’; I didn’t want to understand it. I didn’t want anything to happen to those around me I loved. The night we had to put Selby down though, I knew what ‘losing’ something/someone meant. The emotional effect it had on me I’ll never forget.

It’s interesting to read over everyone’s comments; especially Jacqui’s who commented on me being so ‘strong’. I recall seeing Dad in ICU for the first time. Dad’s condition, the state he was in, all the machines he was hooked up to, and none of it bothered me. It was inspirational; it meant that he had had the transplant and all would be ok. These machines were breathing ‘life’ into him and once he was well enough to take over, he’d do that job himself. He’s strong. He’s an amazingly strong man and I knew that. I made it my mission to find out everything that was going on, to understand what the machines were, what they did, what drugs he was on, everything! It was my way of trying to stay ‘in control’, to be strong. When Selby died, I think it changed me. I lost my ‘cockiness’. I understood you just can’t do it all yourself, it’s ok to breakdown or ask for help from others.

I remember when they were weaning Dad off the sedatives trying to wake him up. Before that he’d have his eyes open but it was clear he didn’t really now what was going on. This time he woke up and was ‘freaking out’ (for lack of a better term). I remember how he looked at me, like a man who was really struggling and asking for ‘help’. It turned out he didn’t realise he had had the transplant; he thought he was in hospital, that something was wrong and he was dying. That afternoon I gave him a little pep talk. I’m not sure if you remember it Dad but I quite sternly told you that you had to hold on, that this was the hard part but you’re a fighter and you can make it through! It was strange being in that position, usually it was on the other foot with Dad guiding me.

I’m rambling now but what I’m trying to say is that this past year, everything that’s happened has really helped me grow up.

We couldn’t have gotten through this without such a strong, close, family. We’ve got an incredible bond that can’t be broken. No matter what’s happened, we’re there for each other. I can’t appreciate this fact enough and I’m certainly not lost on just how important family is.

Mum, you’re an absolutely amazing woman! I hope you understand we all appreciate you more than words can describe, even if we don’t say it as often as we should. Haha, we know Dad isn’t the easiest person to deal with (at times) and you’ve been there for him this whole time, no matter what. It’s an example to me of what two people in love do for each other. Hopefully soon you and Dad will be able to properly enjoy life, to do the things you want to do and have some fun together!

Jax, Mel & Jay, I don’t know how you put up with such a little smart arse for so long! Not that I’ve stopped, I’ve just maybe dulled it down a little bit. To you guys especially, thanks for being there. Jax, I’m so proud of you and what you’ve achieved. You’re so thoughtful, so-friggen-organised and I know you’ll find success in whatever you do (p.s. Andrew’s ok too!). Mel, you strike me as such a strong woman – moving to Melbourne and being away from Mum (who you’re incredibly close to) to follow your dreams has been an inspiration. You’re always up here as soon as we need you! Jay, thanks for being the older brother. You don’t take my crap – even if I didn’t realize it was ‘crap’ at the time. I’m so happy for you that you’ve met Kym, fallen in love and the two of you are getting married! Can’t wait for Las Vegas.

Dad, do you remember you always use to call me ‘Tiger’ when I was young?

I’ve said it a number of times to you in the past twelve months but I don’t know what I would have done without you here. You’re always there with good advice, making me realise that things really aren’t as bad as they seem. In life’s journey I’ve been thinking about you a lot, what you would do or what you’ve been through and it helps me defeat/overcome my obstacles. I’m not there yet, I’ve got a long way to go, so much yet to do and achieve but you can rest assured I’m on the right path.

So now as you’re facing some hard times, trying to get back on the wellness path, just know I’m here for some good advice too – “Go get em Tiger!”

I love you.

Paul.

That Bloody Little Leprechaun

2007-05-02T14:18:00.000+10:00

Early last week it was quite obvious by the way Ben was looking and feeling that something was wrong. I suspected it may have been due to infection, given that Janyne had been sick with the flu the week before and he seemed to fit the symptoms. On Wednesday (Anzac Day) he broke out in a rash accompanied by a considerable amount of pain and decided to call the hospital. Turned out he had Shingles.

For those of you who don’t know, Shingles is an extremely painful form of Herpes that is a reactivitation of VZV (varicella zoster virus), the primary infection which causes chickenpox. It’s one of many viruses that can be caught by people on immunosuppressants (the drugs Ben takes to stop his body rejecting the new lungs). Unfortunately it’s quite painful and although it can be treated fairly easily, using a drug named ‘Valtrex’, the pain tends to stick around for a couple of weeks.

The good news is he is getting better day by day. Today marks a week since he has been taking the Valtrex which seems to be clearing up the obvious signs (rash and blisters) of the virus, just not helping subside the pain just yet. This morning he commented that whilst still in pain, he’s doing a lot better. The inside of his mouth, and tongue, had that many blisters he could barely eat, now he’s starting to. Interestingly enough it usually only occurs on one side of the body, in Ben’s case the left (strange).

In other news, he went in for a check-up on Thursday and all his vitals seem good. Once he feels a little better he’s going to get back on the computer and start blogging again, so I’ll leave any personal details to him.

This brings us to the title of this post, “That Bloody Little Leprechaun”.

At times it can feel like he (the Leprechaun) has sent us on the impossible mission of finding the ‘gold’ (metaphor for ‘good health’) at the end of the rainbow. So far we’ve had the Transplant, the Hip Replacement, the Fundoplication, two cases of stage 2 rejections and now Shingles (have I left anything out?) it almost brings the question, “What’s next?”

We’re almost at the date of the big 1 Year Anniversary (post on that to come soon)!!! Jax (Jacqui) has assured me she’s going to go and find this bloody little Leprechaun, trick him out of the ‘gold’ (yes, yes, the ‘good health’) and we should be fine for next few years! So keep your fingers crossed for Jax, and Ben, and all of us wishing him good health =)

Paul.

Round Up: THE ULTIMATE DONATION

2007-05-02T12:45:00.000+10:00

Wow, what an amazing show!

If you missed it last Wednesday, bad luck, it was the series finale. I’ve sent an email to the Executive Producer, Greg Quail, in hope we may be able to somehow get our hands on it. I’ll let you know what happens.

Janyne (you’ll love this), it didn’t do too badly in the ratings either – No 30. It even beat Burt’s Family Feud (haha).

Whilst the show concentrated its efforts around those who were given another opportunity at life, they did show the other side, death. Unfortunately (I’m still searching for his name) a young (40?) police officer who’d been on the list for quite some time, had been waiting too long. A day after his heart transplant, he died. I’m thankful the wife and family of the man allowed this part to be shown. People waiting on transplant lists are sick, very sick, and with each day they wait their bodies are deteriorating. We need more organ donors! If you haven’t already signed up you can do so by clicking here.

After doing some googling, I found some discussions regarding the show and the Channel 10 web site. Here are the links.

The Ultimate Donation - Channel 10 (make sure to read the Forum)
Organ Donation Petition – eBay
The Ultimate Donation – Essential Baby

There are some interesting debates/views/opinions expressed above on the topic of Organ Donation. I’ve weighed into it with my opinion which you can find here (Post 67 under the name ‘paulboy4212’).

Paul.

THE ULTIMATE DONATION

2007-04-18T17:50:00.000+10:00

In another perfect example of how time gets away from you, I'm leaving it till now to mention this very important announcement. Tonight on Channel 10 @ 9:30pm they're airing the first episode of a short 2 week series named "The Ultimate Donation".

In the words of a Channel 10 copy writer..

" 'The Gift of Life' shows how the often-tragic death of one person can result in organ transplants which can bring the precious gift of life to as many as six people. "

Be sure to check it out! They've had something similar to this on before and it's amazing the process, people and work involved in making it all happen!

Paul.

Happy Easter

2007-04-08T11:13:00.000+10:00

It's been a whole month since my last post. Time seems to fly by.

Had my half Nissen fundoplication on the 8th March as planned. Everything seemed to go well, a bit of soreness for a few days, a bloated feeling for a few weeks, mushy food the whole time, but it seems to have fixed the reflux problem. I'm still feeling very tired yet my lung function is excellent (FEV1 of 3.35 to 3.4), temperature is normal and I'm losing a bit of weight (below 83 kilos) so all the vital signs are good.

Went back to clinic on Monday 12th March and now not due back until 16th April although I have had a couple of blood tests in the meantime. Maybe it's having three lots of surgery over 11 months, or the stress associated with the fall in the GTP share price or both but I find myself lacking in energy. I need to improve my fitness level as I have had little exercise in the past few weeks, just couldn't get motivated. Seems I'll have to force myself as I am keen to try getting back to work soon. (we'll need the money!!)

Finally sold the Porsche (settles next week) so we're down to two cars and I think we'll keep things that way until I see what happens work wise.

It is only four weeks to the first anniversary of my lung transplant (4th May) and only nine weeks until I turn 60 (1st June). It is still hard to believe that so much has happened in a year and I still wonder what might have been had a donor not been forthcoming. Certainly I would not be alive today and Janyne's life would have been quite different (she might even say, "for the better"!!!!!) (Just joking).

Thanks for your good wishes to Kathryn Flynn and Judy Ryan from the Second Wind Lung Transplant Assoc. Inc in the U.S. ( www.2ndwind.org/ ) . This is an organisation similar to the Queensland Lung Transplant Support Group Inc which we have just established here but obviously far more advanced having commenced in 1996. I am hoping we can use their know how to develop our own association.

It is reassuring to read the experiences of others and I think organisations such as theirs and ours, and a blog such as mine, can help people awaiting transplant or those who have already had one, to realise how others have coped and to understand that they may not be alone in experiencing the ups and downs of life post transplant. Whilst we are always grateful for a second chance we can still have our sadder moments the same as everybody else. The key, however, is to concentrate on the good things and do what we can to fix the bad.

Also hello to Rebecca who is in Europe at present, unless she has recently returned.

Anyway, I'm back to clinic on the 16th April and also seeing my "Fundo" surgeon, Professor David Gotley. I'll let you know how it all goes.

Bye,

Ben

So there it is......

2007-03-06T22:30:00.000+10:00

Not a good night tonight.

Feelings?

Worried, concerned, all of the above?

Yes it just seems to get harder every time you have to undergo another "procedure". They put a canula in whatever vein they can find , put you under, probe your insides with various tubes and cameras, hopefully fix the problem (reflux), tie a few knots and send you off home in a couple of days.

In the meantime your financial world is being turned upside down because a few seat hugging backbencher politicians listening to their bleating farmer electorate can suddenly change the whole face of the Managed Investment Scheme scenario. Am I bitter? You bet!

I have spent the past 15 years in this business. The claims made by the anti MIS supporters are based on "anecdotal" evidence, not facts. I have written to every Federal Government Minister I can find to urge them to reconsider this decision. I have yet to recieve a reply.

So where do we go from here? Well we simply live in hope. There is always light at the end of the tunnel. I just find it harder and harder to keep a positive attitude. But in the end, a negative attitude achieves nothing.

But I am very, very tired.

Maybe my "Fundo" on Thursday will make me feel better.

I really hope so! I REALLY hope so.

Goodnight,

Ben

Grey's back - a week's gone by

2007-02-25T21:13:00.000+10:00

Thought it was rather boring last week. Grey's Anatomy that is. Guess I'm just not concentrating.

Had my clinic session on Thursday 22nd Feb. at Prince Charles Hospital. Dr. Peter Hopkins was concerned that I had had two stage 2 rejections in the past nine months. Stage 2 is considered mild. It appears that on both occasions it was the pre surgery (hip replacement and planned Fundoplication) move from Everolimus (trial drug) to Myfortic combined with Cyclosporin that caused the problem. (This drug business is all trial and error).

Now it looks as though I'm off Everolimus, off Cyclosporin, and on to Tacrolimus and Myfortic. I hope I got all that right. So it's wait and see until my Fundo op. on 8th March and then we'll go back to trial and error again. Somehow, I suspect the current drug regime will continue into the foreseeable future.

The controversy in regard to MIS schemes continues to cause me a lot of stress. Great Southern shares have dropped to $2.02 (from a high a couple of years ago of $4.65). That's a massive paper loss for us and with little hope of recovery until some certainty returns to the sector.

The Government simply hasn't done its homework on this and I have urged, as have hundreds of others, that sanity prevail and that there be a stay of proceedings until the matter can be properly debated by both sides, farmers and MIS managers, in the High Court if necessary. I have written to a number of members of Parliament including the Prime Minister, The Treasurer and various ministers, expressing my concerns.

I am not against change as long as it is decided after a thorough understanding of the effect change has on the rural community, on jobs, on export income, and on ordinary shareholders.

"Landline" (ABC TV - repeated Monday 26th Feb 11.00pm Australia Eastern time) today had a fairly balanced report on the industry and it did appear that there will be a phasing in period before non-forestry Managed Investment Schemes are given the chop as far as tax deductibility is concerned.

So we continue to have hope for the future but I can tell you that we don't need all this stress. A new life after lung transplant, little income for eighteen months, the ups and downs associated with drug trials, hip replacement surgery, serious reflux problems, and now financial stress is all taking its toll and I am feeling very tired. It's a real effort to pick up each day and go on. But as always, I say, "Nothing is ever as bad as it seems" and I am sure things will get better.

Let's hope so anyway. I am just very, very tired.

Sleep well.

Tony, good luck for 28th Feb settlement on your new venture and Happy Birthday for Friday (I should have called but at least we were thinking of you). Phil, hope you're feeling OK, or as well as can be expected. Geoff, we haven't heard from you but continue to hope all is well.

Take care,

Ben

Just before Grey's returns

2007-02-18T20:04:00.000+10:00

Hi all,

Grey's Anatomy is back tonight, in just a half hour. 60 minutes is on at present so I'll quickly bring you up to date.

Health wise I am improving again but still experimenting with Tacrolimus following my transfer from Cyclosporin. Levels have been too low and I am now taking 8mg twice daily up from 4mg a couple of weeks ago. In the meantime my prednisolone intake is falling and I'm at 30mg per day reducing to 7.5mg/10mg over the next couple of weeks.

Boring stuff I agree but the underlying concern is that we need to stabilise my medication in readiness for my "half Nissen Fundoplication" early next month. My Doctors are almost certain that rejection and infection is being caused by chronic reflux yet we need to reduce some medication which reduces reflux prior to surgery. So it's the classic "chicken and egg" story but the general consensus is that we manage the situation as best we can, bite the bullet and go ahead with the surgery as scheduled. The sooner the reflux problem is fixed, the less likely I am to suffer rejection and infection and finally I can get on with things.

So that means back to weekly visits to Prince Charles Hospital for tests and balancing the medications as required. I have to admit that my transfer to tacrolimus has its side effects. Moods, particularly bad tempers, are hard to control, sleep is very much disturbed and when I do sleep I have some very strange dreams bordering on scary. Hopefully, as my body adjusts, these things will pass.

So the next goal is to get over the "fundo", feel better, and get on with life.

On the positive side we've lodged application with the Queensland Government to register the "Prince Charles Lung Transplant Support Group Inc". ( I love that term "inc."). We will then call for nominations for office bearers and get on with it. Second, we are finally getting somewhere as far as the water feature is concerned. I had to seek the support of the head of the Lung Transplant Unit, Dr Keith McNeil, but I expect we will be able to install the unit in the next month and have an official handover.

Want to make special mention of a few people. Phil, a fellow transplantee (just over four years ago) who is experiencing some health problems at present. Phil we're all with you and wish you well over the next few weeks. Also Geoff from Bundaberg, I hope you are hanging in there. And finally I can report that our President to be, Glenda Murray, has recovered well from her surgery and is looking better than I've seen her for a long time.

Anyway, it's showtime so I'm off. Talk again soon.

Ben

If I lay here

2007-02-11T22:39:00.000+10:00

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Heard this song first on "Grey's Anatomy" on the final program of the season 2006 and it has been on my mind ever since. In fact I'm watching a repeat as I write. Obviously a prequel to the new season. As you know there is a certain affinity between me and hospitals and, although my son Paul thinks the show is crap, for me it brings back a lot of memories.

Just yesterday, my daughter Jacqui was visiting and playing a game, "Zuma", on my laptop. I was having a rest in bed at the time and in a half daze could hear various tones emanating from the computer as she played the game and it sounded just like the tones emitted by the respirator keeping me alive in my early days in intensive care immediately post transplant. It was like waking up to (not from) a nightmare. The pitch went higher as she "crashed" more balls and so would the pitch on my lung machine until finally, the air would expel inside my lungs (she's missed the balls) and the tone immediately lowered only to rise again with the next "breath". The mind works in mysterious ways.

I think all of us at times find life so difficult that we would like to just lie down with the one we love and let the world go by.

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

Problem is we can't forget, we do what we're told, and the only garden that can burst into life is the one we create. Have to say, my little garden IS bursting into life. Had a great day today and did something nice for someone who really appreciated it. It's always good to do something nice.

I don't know where
Confused about how as well
Just know that these things
Will never change for us at all

Got no idea what those words mean to the song writer but I'd disagree in that I do believe we CAN change things is we want to. Just got to make some effort.

Anyway I'm rambling and feeling emotional so I'd better shut up and go to bed. Just blame it on my medication. Phil, hope things go well tomorrow.

Ben

What a week..............

2007-02-10T20:45:00.000+10:00

Ben's back.

Yes, just ten days ago I was blogging away saying how bad it had been leaving this thing for two months and suddenly, BANG!, I'm back in hospital, Paul's taken over the blog site (I think he should do it full time he does it so well). My "Half Wrap Fundoplication" has been put on hold and the financial world as I knew it has, well, partly collapsed, for the short term at least, until things settle down. Won't go into the details but let's say we're a bit poorer than we were a week ago and we hope things will get better.

Janyne and I felt we might just sell up everything, buy a 4WD and a caravan (or trailer if you're in the US) and piss off. But of course we won't. Far to sensible for that. Anyway I have my "Fundo" due 2nd March and I am sure that will make things better. Less risk of infection and rejection.

So what's good. Everything is good. Little experiences such as this just bring back the importance of what it is to be alive. Not just exist but to be ALIVE! In the end, no matter how bad you feel, how ill you are, life doesn't owe you anything. No special favours just because you're feeling sorry for yourself. In the end, no one really cares about all that. No one but you can make you better. Only you can make a difference to the way you feel. Thank God your family and loved ones can help you through it. No one likes a pain in the arse ("ass" for US viewers)so think positive and get on with it.

So what have I done?

Well last night around 10.00 pm I made a decision I have been agonising over ever since my lung transplant. I wrote a letter of thanks to the family of the person who donated my lungs. Now to those of you who haven't experienced this, that may appear a simple matter of course, but it is one of the most difficult things to grapple with. Remember someone has died in order for me to live.

I don't feel guilty about that. That person would have died anyway. But imagine how that person's family and loved ones must have felt at the time. To think that various body organs of the one they loved are going to different parts of the country, sure, hopefully saving lives, but how do they know? I, we, who have received those parts and are now alive because of that owe a great debt of gratitude to those donors and their families and to be able to express that gratitude is more difficult than I had imagined but something we all, we transplantees that is, simply have to do when the time is right.

Last night the time was right. One day I may publish my letter. For now I want it to be read by the donor family first. It is for them. No one else. I would publish it only if I felt it could help others like me to do the same; thank their donor families.

But isn't life strange? I got to bed about 11.30pm, woke Janyne and asked her to read it. Here it is, the most emotionally difficult thing I have done in a while, and Janyne's first impression is that I should remove the word "corticoid" and replace it with something the common man/woman could understand. Forget the outpouring of emotions that I have built up over nine months; just concentrate on one word, used twice I must hasten to add, but in the end, just one word. See why I love her so much? She keeps me sane.

So I am feeling positive. The massive doses of steroids (rejection) and antibiotics (infection) leave one a little strange but that will pass. My lung function is better than it has been for a few weeks and everything else seems to be going in the right direction. I have also had a change in one of my immuno-suppressants from Cyclosporan to Tacrolimus. Paul has already explained these drugs in previous posts but all these changes have an effect on one's metabolism and it takes time for things to settle down.

I am back for a check-up on Thursday 15th February and we'll see how we go then.

Well, for now I'll enjoy my glass of wine and then off to bed.

Talk again soon,

Ben

Good News

2007-02-08T12:49:00.000+10:00

I just got off the phone with Ben and he let out the exciting news; he’ll be home this afternoon! They’re just dosing him up with another drip full of drugs, feeding him some grub and then as soon as Janyne arrives he’s out of there!

Whilst on the phone I also got an opportunity to probe into the swap from Cyclosporin to Tacrolimus (see: Hello Tacrolimus). It turns out that Ben’s kidney function had been deteriorating recently, with his blood/sugar levels being close to that of a Diabetes sufferer. To combat this they’ve moved him to Tacrolimus, the main immunosuppressant used in Kidney Transplants, in hope it’ll reverse the effects. It’s only been a day but Ben’s feeling a lot better after the swap, commenting that he isn’t “feeling as nauseous” as before.

The doctors have blamed this recent bout of rejection & infection on ‘reflux’. I don’t know the specifics but I’d suggest that it has something to do with acid regurgitation from the stomach to the lungs (read more here & here). He was of course due to have that operation today however, due to this current setback and the fact the Surgeon is going on holidays shortly it won’t be until early March. The sooner the better I say.

Another blood test scheduled for tomorrow morning will reveal if anything else is abnormal. Luckily he can get that done remotely, rather than having to go into hospital again. Let’s hope its all clear! Although he doesn’t shutup about how beautiful the nurses are he tells me he really doesn’t enjoy being there!

Paul.

Hello Tacrolimus

2007-02-07T23:26:00.000+10:00

“Who would have thought that all along it wasn’t rejection we needed to worry about; it would be the Great Southern (GTP) share price that’d ultimately kill him.”

Okay, okay, that’s a bad joke but I couldn’t resist. For those of you that are aware of Ben’s relationship with Great Southern (GTP) I’m sure you’ll get it, for those who don’t – it might take too long to explain. Let’s just say, that in a day that could of being disastrous, things actually turned out okay. “Fingers crossed”, as we too often say.

On the health side there are some welcomed developments. Ben’s on the drip and doing well or as Janyne puts it, “he’s full of life and colour”. Of course we won’t know until late Thursday or early Friday, after the blood tests, whether it’s worked or not but all signs are positive at this stage.

I was talking about the ‘balancing act’ in my post yesterday and today the Doctors made some more changes to his medication. They’re out with the Cyclosporin and in with the Tacrolimus. What the? In short, they’ve made some changes to the main immunosuppressant drug Ben’s on. You might recall, ‘immunosuppressants’ are used to prevent the rejection of transplanted organs – in Ben’s case, they stop his body from rejecting the new lungs. I’ve spent a little time on here (the net) reading clinical studies about the difference between both of the drugs. It looks like Tacrolimus, according to what I’ve read, reduces the likelihood of ‘acute rejection’ in transplant recipients. According to wikipedia, Tacrolimus is “more potent than Cyclosporin and has less pronounced side effects”. I’m far from being a Doctor but to me, it sounds as though it’s a good thing.

Here’s an overview of the two drugs and immunosuppressants in general. To find the clinical studies just google "tacrolimus vs cyclosporin" - keep in mind it might take a bit of filtering to find something relevant.

There’s really not a lot else going on. I’ll be back on tomorrow, writing another post and filling you in on where we’re at. It looks like Friday might be the day he gets out. Not a bad present for the weekend.

Paul.

A Bit of Bad Luck

2007-02-07T00:08:00.000+10:00

Hello readers! It’s Paul dropping in once more to fill you in on the latest happenings whilst Ben’s away.

Unfortunately, he is back in hospital a little sooner than we expected. The plan was to have the reflux operation this Thursday however, a problem arose in his routine checkup on Monday which meant another unscheduled stay at Prince Charles.

What is it this time? Rejection. Yes, rejection has reared its ugly head again which explains the discomfort Ben has been experiencing the past few weeks. Whilst we don’t know exactly the severity, the doctors believe after a good dose of Prednisolone, administered via drip, he should be emitted this Thursday afternoon (fingers crossed). If the rejection wasn’t enough, they’re also dosing him up on antibiotics to try and fight infection as well. Whoever came up with the ‘one step forward, two steps back’ rule certainly wasn’t lying.

It’s an unexpected knock back and it means that Ben won’t be having the reflux operation this Thursday, as planned. Instead they’re going to let him recover from this first and have pushed the operation back to early March. He’s probably thinking ‘great, another anxious wait.’

With transplants, as with life, there are no certainties. Yes, people have had them before but there is no clear path a patient should take, they’re all different. Some patients feel ‘fantastic’ and thrive from the beginning, some struggle with all sorts of adversities early on and others have patches of great health here and there. It’s very much a balancing act. Doctor’s are constantly balancing the levels of drugs vs the health of the patient, the patients are balancing the ups/downs they’re experiencing and the families go along for the ride. It’s not always easy and that in itself is a reflection of life. Just know we’re all very positive about the future and this is little more than a small setback in the bigger picture.

One thing is for sure; throughout this whole experience I’ve been truly grateful to have had Dad here. I can’t recount the number of times, just this past month, I’ve selfishly picked up the phone and dumped my life’s problems on him and his always been there for me, either with sound advice or a swift kick up the bum (the latter probably being the more needed). I’ve deeply appreciated it and now, after everything we’ve been through, it’s this last couple of months, more profoundly than the others, which have inspired me to be a better/bigger person. Thanks Dad!

Paul.

Cindy Pics

2007-02-01T20:52:00.000+10:00

Following on from my earlier post today, we thought you'd like to see some recent pics of Cindy and here they are..

And another..

And another..

Yes she is cute.

Sweet dreams,

Ben

Time flies when.........

2007-02-01T10:35:00.000+10:00

Hello all,

It has been a long time since I last posted something on this site. Almost two months. In the meantime we have seen Christmas and New Year's come and go so I hope you all had a great time and continue to keep your New Year's resolutions.

I had seriously thought about discontinuing this blog as life is pretty much normal these days depending on your definition of normal. However due to overwhelming demand (at least three people have encouraged me to continue) I have decided to go on. Some feedback would be nice.

When my son Paul first started this site, it was to keep family and friends informed about my progress immediately following my bi-lateral lung transplant. It saved Janyne a lot of time on the 'phone and meant she wasn't repeating herself when people rang. It also ensured that the same story was being told to all interested parties.

Longer term, many of you have found it useful in understanding life following major surgery and I know for some, it has provided comfort that the experiences they are going through are "normal" post transplant. There are physical changes or conditions which are directly related to the new organ or indirectly, due to medication. It is a never ending process of trial and error with medication, of managing risk of infection without becoming so afraid that one becomes a hermit, and then there is the emotional side.

For me that is a bit like a roller coaster ride. Some days up and others down, just like most people I guess. Now most of you who haven't experienced major life saving surgery following severe illness would think that life is a ball when one is given a second chance at it and cannot understand that one would feel depressed at any time. Yet it is my experience in talking to others and to Medical Professionals that this is a common symptom amongst transplantees and needs to be addressed. To be honest, I have had those feelings for some time and they make one become lethargic, lazy even, (hence my delay in updating this blog) where one would rather stay in bed (metaphorically speaking) than get up and face the day. Small problems become large ones and there are also genuine concerns about finances and worries about fitness, weight and future medical procedures.

One solution I feel, is to work on one's fitness. I have put on some six kilograms in the past two months (too much food and wine over the festive season and not enough exercise). I haven't exercised as much as I used to due to chest pains which seem to manifest themselves as soon as I do something strenuous. Also, with my left leg now slightly shorter that the right leg, walking long distances is more difficult and tiring. In addition, I haven't been able to use my exercise bike post hip replacement until recently.

Excuses, excuses, excuses. "Enough!" I said to myself last week. "If I want to feel better, I have to work at it". So I'm back on the exercise bike, walking a bit more, doing some weights and I have to admit that I am starting to feel better.

My goal is to get back to 80 kilos and turn some flab into muscle. No doubt the partial wrap fundoplication I will be having next Thursday 8th February (to fix the reflux problem) will help as I will be on "mushy" foods for a number of weeks post surgery and likely to feel "full" with less food intake.(http://www.simonwoods.com.au/reflux.html) Hopefully I will be able to continue my exercise program.

The next step for me is to get the transplant group registered (yes, I haven't even bothered with this, tut, tut!) and get some commitment from the Prince Charles Hospital administration in relation to placement of the water feature we purchased as an anniversary present in September and have held in storage pending completion of renovations at the hospital.

In the meantime, our new "puppy" Cindy is growing up but a delight to have around and all is well with the family. Not looking forward to Thursday but I am sure it won't be too bad and recovery will be swift. I will let you know how it all goes.

Until then, take care.

Ben

Dog? What Dog?

2006-12-03T21:11:00.000+10:00

Now you won't believe this but on Monday 27th November we bought a new dog. Since the passing of our beloved Selby two days after my lung transplant, we had been weighing up the pros and cons of having another pet. Simply couldn't make up our minds.

Anyway, we kept going to pet shops and looking but just could not make a decision. All the practical reasons why we SHOULDN'T overruled the emotional reasons why we SHOULD.

Last Sunday I happened to look at advertisements on the Trading Post website and saw this adorable little puppy for sale and said to Janyne, "Why don't we take a look?" So on Monday we took the half hour's drive to the pet shop and as soon as we saw her, we both fell in love and decided there and then that this was the one.

Did you say "her?". Yes, I would never have believed I'd have anything but a male dog but here we are, a female Bishon Frise X Tibetan Spaniel. A quiet, delightful ball of fluff we have named "Cindy". "What?" the family screamed when we told them, "Cindy? What kind of name is that?"

There was even a suggestion that I must have received female lungs as this surely is proof that my female side is coming out, something most of them have suspected since I left hospital post transplant. But no, we are both very happy with our decision. She's not a Selby and will never replace him but she has a personality of her own and I am sure she'll bring us both a lot of happiness as I know we will her.

Anyway her is a photo of her. She's just 11 weeks old.

She was introduced to Patch, our neighbour's dog, and the two get on really well although sometimes I'm not sure if they're playing or fighting. Toilet training is a challenge but I think we're getting there. So there it is.

As far as my health is concerned, I had a test to check for reflux last Wednesday and Thursday, another test to discover the cause of my recent chest pains, and it appears that I have a problem. I'll find out this week but it is likely I'll need surgery to rectify it. Not sure what it is called but it involves keyhole stomach surgery which prevents acid coming back up the oesophagus (gullet) and into the lungs where it could do some damage. Apparently, it also disables the ability to vomit which could be of concern if one feels off at times (like after a drink or two too many or an adverse reaction to food or medication). Not sure I'm happy with that as I imagine such a situation could be very uncomfortable. However, if it protects my new lungs and therefore keeps me living longer, I have to do it. Just another trial in the journey of a lung transplantee.

On Wednesday this week, I am having a precautionary bronchoscopy and lung biopsy. This is because my lung function tests have not been as good as they were, FEV1 readings being around 3.00 to 3.20 compared to 3.50 and 3.60 and more some weeks ago. Not alarming but enough to check that everything is functioning OK. I have also noticed some shortness of breath lately so best to find out what's going on. It could be an adverse reaction to the drug EVEROLOMUS which I have been trialling. We'll see.

Whilst at Prince Charles Hospital, I am seeing the orthopedic surgeon to have my hip replacement surgery reviewed. It's improved a lot since my last post but I still have some pain and walk with a slight limp. This may be normal but I'll find out.

Anyway, that's about it for now. Talk again soon.

Take care,

Ben

Is anyone out there?

2006-11-26T21:43:00.000+10:00

I just looked at the last time I updated this thing and I am ashamed to have left it so long.

There are a number of you (150 odd I believe) who look forward to the next episode in the life of BRIAN no matter how boring it might be.

Depression is a strange creature. There is absolutely no reason for it as far as I'm concerned. I have the great gift of new lungs. That's a very trite way of saying I'd be dead now if it wasn't for some wonderful person out there making a decision which he or she never thought they'd have to make, or more specifically, their loved ones would have to make. Yet I read of a young 17 year old being bashed for whatever reason to a point where he is on life support and may well have the same opportunity that my donor and family had and it makes me wonder what life is really all about.

Here I am with a whole team of wonderful people constantly making sure that I have the very best chance at life and yet someone out there could lose his life for simply being in the wrong place at the wrong time or asking the wrong question of the wrong person or maybe just having a drink or two too many as we all have done and suddenly and sadly he will never be the same person he was before, if he survives, or worse, and it is worse, his family and friends will have to face a set of circumstances they'd never thought possible at such a tender young age.

The only possible good thing that can come out of this, apart from a complete recovery, and miracles do happen, is that he had the foresight to be an organ donor and that his family supports this. Because it is probably, and I don't know what the real circumstances are, such a situation, that has resulted in my being alive today.

These cases cause me to think deeply about my position and I do get depressed. "Selfish bastard" I say to myself. How dare I feel anything but gratitude for the chance I have and the new opportunity I have been given to do something worthwhile with the rest of my life. There is no logical reason to be anything but happy. There is absolutely not one single reason to feel depressed. And yet I do. And I don't know why.

We had a great holiday at Port Douglas. The weather wasn't too hot and we went to all the touristy places as we usually do. Saw only one tiny baby crocodile on our Daintree River cruise which is less than usual but it's the wrong time of the year. Too warm. Ate too much and probably drank too much but put on a few kilos without doing too much other damage.

Janyne's been ill since we got back with an ear infection and I'm hoping it clears up soon. She is really quite amazing and hardly ever gets sick but this has really knocked her about. We're hoping the antibiotics kick in soon and she starts to feel better.

The next few weeks involve reflux tests, bronchoscopies, hip check-ups and the usual clinics. I have to do some work on the Lung Transplant Association as we now have over 30 responses so that should keep me busy. Also the water feature (remember the 10th anniversary gift) is ready for delivery so I need to finalise arrangements with Prince Charles Hospital as to its location and delivery times.

So I have plenty to keep me busy and that should get me into a more positive frame of mind. We're still looking at buying a new puppy and as soon as we see one we like, we have second thoughts. Some day.

So it's off to bed for now. Talk again soon. Take care.

Ben

Did I speak too soon?

2006-11-02T20:49:00.000+10:00

Quite a few things have happened in the last week or so. First, we have received just over 20 responses to our "expression of interest" questionnaire concerning the formation of a more formal Lung Transplantee Association/Group or whatever. This is disappointing considering we sent out 120 letters. However we'll give it more time. We have enough interest to proceed and only two responses were negative. Quite a few people stated they wanted to be involved on the committee so that's good. As usual I'm probably being a little impatient.

On the bright side, we've finally made a decision to have a short holiday. On Monday 13th November we're off to Port Douglas for a week or so. This is north of Cairns in tropical Queensland and it will be hot and humid, a real test for my new lungs. We decided that if we waited until everything was perfect, we'd never do anything. Monday is clinic day so hopefully I'm declared fit to go. The hip is getting better every day and I am spending as much time walking unaided as possible to strengthen the muscles.

Reflux testing takes place on 29th and 30th November. It's a minor procedure apparently and I hope the news will be good. Anyway, we'll worry about that when the time comes.

At the moment we're "dog sitting" Patch, our neighbour's dog. He's only five months old and is a real delight. It will be hard to give him back when Suzanne returns from holidays interstate on Monday. Having said that, I'm still not sure I want another dog full time. At least with Patch we can give him back at the end of the day. We'll revisit this issue when we get back from holidays. I think Janyne will probably convince me to change my mind as I know she really misses Selby. We'll see.

Good too hear from Rebecca and I hope the news about your lung condition is good. Let me know.

Jean, thanks for your comment of 2nd October. Sorry not to acknowledge earlier. Your Doctor Michael Musk is from Perth and on secondment to Prince Charles Hospital for a twelve month stint learning the lung transplant ropes from Drs Hopkins, McNeil and Kermeen. He has treated me on a number of occasions and I am very impressed with his level of care and bedside manner. He is a really nice guy.

Anyway, I'm off to bed so until next time, take care.

Ben

Sore hip? What sore Hip?

2006-10-25T22:07:00.000+10:00

Good day all,

As mentioned last time, I had an appointment with an Orthopedic Surgeon at Prince Charles Hospital today as I was concerned that I was still experiencing considerable pain in my left hip yet it is nearly seven weeks since the total hip replacement surgery. Others I know are walking around without an aid after this time.

After a thorough examination and x-ray, it seems there is nothing abnormal. It is just taking a little longer for the wound to heal properly and for stiffness to ease. I need to be more patient.

Saw an x-ray picture of my "new" hip for the first time. Fascinating and quite amazing that such a small ball and socket can support my weight without snapping (at least I hope it can). Could also see the wires which attach the muscle back to the bone post surgery. When you see the amount of original bone which has been cut out, it really makes one marvel at medical technology and the skill levels of the modern surgeon.

I did discover that my left leg appears to be very slightly shorter than the right but it shouldn't present a problem. Hopefully when the muscle in the left thigh returns to normal it might rectify itself. Also discovered that, in Queensland at least, it is an offence to drive a motor vehicle for the first three months after hip replacement. Not only would my insurance company be able to avoid any claim in that time but I wouldn't be covered by third party insurance and in the event of causing injury to others, could be sued for up to $6,000,000. OUCH!

Looks like 7th December before I can get back behind the wheel. (Hope I haven't forgotten how to drive by then). In the meantime my chauffeur's (Janyne's) driving skills have improved dramatically with all the running around she does for me. I am truly a lucky man.

Replies to my Lung Transplantee Association questionnaire are coming in with very positive comments. I'm looking forward to the next few weeks as this idea progresses towards reality.

Talk again soon,

Take care,

Ben

Must be the drugs!

2006-10-24T20:16:00.000+10:00

Good evening all,

Had my visit to the outpatients clinic yesterday and everything seems to be OK. Lung function was down a little but still at 102% of expectations so who's worried? Changed the blood pressure tablets so that my legs won't fill up with fluid. Not as much anyway. Reduced prednisolone to 12.5mg per day. No change to other anti-rejection drugs.

Still suffering some pain in the left hip and I thought after six weeks I'd be better than I am. So Dr Hopkins suggested I see my orthopedic surgeon, Dr Scott Crawford, and I'm back there tomorrow. Hopefully I'm just impatient and there's nothing really wrong.

Must admit to not feeling too well today. Don't know what it is but feeling run down and tired. Feel like I'm getting a cold that never manifests itself. Must be the drugs I'm taking. That's one of the problems post lung transplant as many of you will know. The body can react in the most unexpected way to both physical and emotional changes and it is usually a change in the medication we take that starts the ball rolling. As Dr Peter Hopkins once said (well he's probably said it many times) Lung Transplants aren't easy!

A little sad too the poor Glenda who has done so much to support lung transplantees in Queensland, is back in hospital and facing further surgery. I know those of you who know her will join me in wishing her all the very best. Just another reminder that a lung transplant is not a cure but an opportunity to extend one's life. Almost everyone will have further problems in his/her post transplant life, some worse than others. The key is to make the best of the good times and be confident that the bad times will pass and that, with the Queensland Lung Transplant Unit, we have the best health care possible.

Starting to get some early responses to our letter last week concerning the formation of an Association of Lung Transplantees in Queensland; all positive so far. Expect the rest of the week will be busy answering questions and looking over questionnaires. At least we're moving.

Experiencing some resistance to the Water Feature gift as expected. Some in administration at the Prince Charles Hospital simply feel that the new wing can't accommodate it. Anyway, I hope to meet with the hierarchy soon to resolve any issues. I'm not giving up on this.

Rebecca, I hope you're OK.

Cheers for now,
Ben

What's new?

2006-10-19T20:48:00.000+10:00

Yes I know it's more than a week since I updated this but I keep hoping to have something interesting to write about and here it is, Thursday 19th October, and I'm still struggling. No more severe chest pains, no hospital visits, haven't been anywhere except to the shops, no driving (for another 6 weeks or so), hip's getting better every day (practicing without a walking aid as much as possible), still not sleeping well at night. Boring isn't it?

What about next week? Well I am back to the hospital for normal checks on Monday and then the doctors will decide if I should have a reflux test to see if this is the chest pain culprit. Barring that, I am hoping we can extend these clinic visits to monthly rather than fortnightly. That way Janyne and I can plan a time to get away for a holiday which we both need. We'll see.

One good thing is that, tomorrow, we are finally sending out "expression of interest" forms to all those lung transplantees currently being looked after by the Prince Charles Hospital Lung Transplant Unit. The aim is to gather support for a more formalised association and use it to provide support and fund raising services for all matters relating to lung transplant. I am looking forward to getting the responses in the next few weeks and getting the ball rolling.

Another good thing is that I purchased a new Laptop this week. It's a HP Pavillion with all the required goodies. It's very fast and I'm very happy with it. Paul set it all up for me. The only problem with it is re-loading all the software and remembering to transfer important files. I think we managed that but I do have a confession to make.

I enjoy playing a computer game called "Jewel Quest" and was up to level 2, sector 5.6. Naturally, when re-loading the game on the new computer, it didn't save my game at that level (probably something I did wrong) and I have had to start again from scratch. Accordingly much of the week has been involved in catching up, much to Janyne's annoyance (she can't stand my playing this game and claims I'm addicted. Mind you if I spent time reading, doing crosswords, or even knitting, she wouldn't say a word. There appears to be an issue with females about men sitting in front of a computer for long periods at a time. I am sure many of you can relate to that!!!). Anyway, it is one of the few things I enjoy doing during a time of limited mobility. In a few months I'll be back working somewhere so let it be. By the way, I'm back up to sector 5.4.

Well folks, I'll write again after Monday's visit to the hospital and will also keep you abreast of results of our mailouts. Until then take care. (Rebecca, haven't heard from you recently. Hope all is well).

Ben

Picture of Health?

2006-10-10T14:20:00.000+10:00

Good afternoon everyone.

Just to finalise this chest pain problem I have been having, an abdominal ultrasound yesterday appears to show the gall bladder in good shape and no sign of swelling or gall stones (sorry Phil).

So we now have to see if reflux is the culprit. I'll be having tests for that in the next few weeks. If it's not that, then I don't know what it can be. Had another very mild attack last night.

The good thing about this process of elimination is that increasingly I am finding out how healthy I am. Good heart and arteries, good lungs, good kidney function, good gall bladder etc. Another month or two and the hip will have recovered sufficiently for me to be running around the place.

On another matter, I have finally drafted a letter seeking expressions of interest from Lung Transplant recipients, to develop a more formal association of members with a committee, constitution, etc. I hope these will be sent this week and questionnaires returned by mid November so we can start organising some meetings and get things underway.

Until next time,

Take care,

Ben

Got to admit it's getting better.

2006-10-07T17:14:00.000+10:00

Good evening all,

Had a great day today.

Janyne and I decided we'd "have a day off" and just relax. Ended up hopping onto the golf buggy and looking at all the new developments around the resort. Our economy must be in great shape because the housing/unit development business is booming at Hope Island.

Had a couple of wines at the Clubhouse and sauntered back to Suzanne's house to visit Patch (our part time dog). Janyne's now cooking dinner (roast beef I believe) and Jacqui and Andrew have just arrived to stay for the night.

Now, let's get back to the Gold Coast Hospital.

As mentioned yesterday, after two episodes of chest pain on Sunday 1st October, I contacted Dr Peter Hopkins at the Lung Transplant Unit at Prince Charles Hospital, who suggested we go to the Gold Coast Hospital. He had pre-warned the medical team there and, on arrival, I was immediately taken through to the emergency ward and received a number of tests all under the direction of a Dr "Steve" who was simply first class in his handling of the situation.

Unfortunately, his shift ended at 7.00pm.

Prior to his departure, he told me that he had discussed the test results with Peter Hopkins and both agreed that I should stay overnight to undergo further tests in the morning. "Steve" assured me that the ward registrar would visit me before 9.30 pm and "admit" me to a ward overnight. I enquired about some food but being a Coeliac (gluten/wheat intolerance), this proved to be difficult. By 10.45 pm, still awaiting a visit from the registrar and admittance to a ward, I was advised some food in the form of jelly and custard had been found in the children's ward and they were getting it for me.

In that period from about 4.30 pm to around 11.00 pm I saw some amazing sights. From a beautifully groomed older lady in pajamas and dressing gown who was genuinely suffering from chest pains, to injured drunks celebrating the Broncos Grand Final win, to drug affected foul mouthed young women blaming everyone else in the world for their troubles except themselves, to overly anxious parents concerned about their infant's cough.

How the staff managed this chaos is beyond me. Security guards had to remove one irate visitor to an inebriated patient, who was swearing about it taking too long to fill out some paperwork.

Anyway, my jelly and custard arrived around 1.00am, no registrar arrived to admit me to a ward, the chaos continued and by 2.00pm I'd had enough and decided to go home.

Now I am not complaining about my treatment. It was excellent. And I'm not complaining about the staff. They were brilliant given the difficult conditions under which they had to work.

I am blaming the patients.

For too many years now, governments have been keen to offer "FREE" medical treatment to everyone. It's a vote winner and I have always been of the view that politicians exist for the sole purpose of being re-elected (yes I know there are some genuine exceptions, but not too many).

First it was Medicare, but medical practitioners' costs went up at a rate faster than the increase in the Medicare payment and a "gap" started to be charged by GPs. However, if one went along to the local hospital or to some of the local after hours medical centres, only the Medicare payment would be charged.

The result is that our emergency hospitals are grossly overloaded with people who simply want free health care often at the expense of those in genuine need.

WHY?

Every new major road in Australia, every new tunnel, every bridge now appears to attract a toll. We have GST, numerous levies (it's not a tax!) and now due to widespread drought we're told we'll be paying more for water. This is in addition to personal taxes, company taxes, numerous State and Federal indirect taxes etc.

In other words, we pay for, and expect to pay for, every imaginable service; except Health.

WHY?

Of course the answer is, "Well, we pay 1.5% Medicare levy and that should be enough".

IT'S NOT. Nor would any amount of Medicare levy be enough. It is just another indirect tax. It doesn't hurt. And not all of us pay it do we?

The problem is that many of those who seek "free" medical treatment don't pay the levy because they're not working or have an income below the Medicare levy threshold. They rely on the rest of us to pay for their Health services.

The solution to the overcrowding of our health system and the chaos it brings, is to charge everyone, say, $20.00, for a visit to a doctor, a visit to hospital, an ambulance call or whatever. That's $20.00 in addition to the Medicare payment.

Whether employed, un-employed, retired, pensioner, health card recipient or whatever, we can find money for pizzas and hamburgers, for poker machines, for TAB bets, for alcohol, for illicit drugs, for cigarettes etc. Don't tell me we couldn't find just a lousy $20.00 for medical care if we genuinely needed it.

OF COURSE WE CAN!

If a government of any political persuasion had the guts to introduce such a fee, despite my lack of research in this area, I believe we would halve the number of people simply attending emergency services for minor issues, Hospitals would be able to properly do the things they are there to do, GPs would have less stress and the whole Health system would improve dramatically as would staff morale amongst Emergency Health medical professionals.

But it won't happen will it? It's not a vote catcher.

Or can it be done? If enough of you reading this stuff got behind the concept, I am sure we could persuade those in power to re-think this whole area of free medical treatment for all. In the end, we'd all, even the bludgers in our society, benefit with a far more efficient, more friendly, more capable GENUINE Health Service.

I'd welcome your thoughts.

Goodnight all,

Ben

Thank God It's Friday

2006-10-06T19:21:00.000+10:00

Hi everyone,

As you know, this time last week I was on top of the world and just a few days later it all changed again. On a couple of occasions in the past couple of weeks I had experienced chest pains but put it down to indigestion. However, on Sunday, 1st October, I had two quite severe episodes, one sometime after breakfast and the other about an hour after lunch, each lasting about 25 minutes.

Paul happened by during the second attack and, fearing heart problems, I asked him to contact Prince Charles Hospital. Fortunately Dr Peter Hopkins was on duty and he suggested I go to the Gold Coast Hospital. So I phoned Janyne, who had taken the golf buggy to the supermarket, and home she came to again take me off to hospital (and she thought she was over those calls).

Peter had phoned ahead and I was immediately admitted into emergency and a host of tests were performed. Had a magnificent doctor "Steve" looking after me and whilst I can't complain about the service, the Gold Coast Hospital needs some major attention. I'll talk more about that later.

Anyway, I checked myself out deciding I'd rather go back to the excellent care at Prince Charles. Poor Janyne gets woken up at 2.00 am to pick me up. A few hours sleep and I phoned Prince Charles Hospital only to be told to come in. Here we go again, back to my second home.

Anyway, an ECG showed some irregularities so a huge number of tests were done over the next four days including a CT Scan, Angiogram, Ultrasound, Endoscopy, numerous blood tests etc. They really are thorough at Prince Charles and I am in awe at the care and attention they showed.

To cut a long story short, my cardiovascular system and lungs are in great condition so they are not the cause of these chest pains which I continued to experience a couple of times whilst in hospital. So essentially that leaves either reflux or gall bladder as the probable cause and I am having an abdominal scan on Monday to see what the gall bladder looks like. If that's not the answer, then I will undergo a reflux test which involves putting a tube down the oesophogus for 24 hours and seeing what it collects. (Reflux can be a problem as food gets into the lungs and this can cause infection). It's a simple procedure (apparently) and will determine whether reflux is the culprit (even though the endoscopy produced a negative result).

Anyway, after a magnificent lunch at Baguettes in Racecourse Rd. Ascot (sounds good doesn't it? It was!!! Mind you I had four salads in four days and lost 5 kilos so I needed a big lunch), I came home today given my condition is not life threatening and hope to be back in a couple of weeks for a normal clinic session barring any urgent treatment needed in the meantime.

This is one problem that every lung transplantee experiences. The uncertainty of the future. It's a huge emotional burden which both the transplantee and his/her partner, loved one, carer or whoever has to live with. At anytime things can go wrong due either to complications with the new lungs but more commonly to reactions to the very medications designed to keep one alive. Two of my fellow transplantees coincidentally are experiencing problems at this very moment. One has a cyst on a kidney and an enlarged gall bladder and the other has an abcess on the bowel which could be life threatening. For both it is over four years since tranplant.

As Dr Peter Hopkins said the other day, lung transplants aren't easy.

To be honest, it is hard to be positive at times and both Janyne and I need a break from it all. Hopefully we can have a bit of a holiday soon and just relax. The good news of course is that my main organs are in great condition which I wouldn't have known but for these tests so there is a bonus in every situation. Don't worry, we'll feel better and more positive tomorrow.

Anyway, with the week stuffed, I haven't been able to do anything further about establishing that transplantee group I've spoken about before. I know a week is nothing in the whole scheme of things but to someone who has been given a second life, it's a week lost and that's not good. I simply didn't have the emotional will to do anything else until I'd ruled out serious illness. Hey, I'm human after all.

However, verbal response to date from transplantees has been very positive. I'll get onto it next week.

Received an email this week from Jean in Perth, Western Australia, who stated that a lung transplant group was established there about 18 months ago. Jean, please email me again (benbrian@iprimus.com.au) including your email address. When anyone responds to my postings as per the comments option below, your email is shown at my end as anonymous and I cannot respond as I don't have an address to respond to. So all of you out there, please send me your email address if you want me to contact you and keep in touch. Rebecca, still thinking of you and hope things are OK.

It is a bit late so I'm off to bed but I'll give you my Gold Coast Hospital story tomorrow. I am sure it will make interesting reading. In the meantime take care.

Kind regards,

Ben

What a great week. And it's only Thursday

2006-09-28T19:22:00.000+10:00

Hello everyone,

It's been a great week since coming home from hospital last Saturday. My rejection period appears to be over. Today, clinical tests at Prince Charles Hospital produced the best lung function test yet with an FEV1 value of 3.46. I have had readings of 3.5+ on my home machine but never this high with the hospital's more sophisticated machinery. (FEV1 = (forced expired volume in one second) is the volume expired in the first second of maximal expiration after a maximal inspiration and is a useful measure of how quickly full lungs can be emptied). . Many of you wouldn't blow these numbers.

X-Rays show up lungs in very good condition and all my vitals including kidneys, of some concern last week, are working normally. This is all very gratifying.

Oh, by the way, my left hip is getting better everyday since replacement surgery three weeks ago. So well I'd almost forgotten about it.

To top things off, my older brother Rob and his wife Maureen, who live in Sydney, accompanied by my (also older) sister Marian who was holidaying with them from Melbourne, came over for dinner on Tuesday night. They decided to pop up to Queensland for a bit of a holiday and to see how I was doing. We had a great night and Janyne cooked a magnificent meal as usual. Paul, Jacqui, Jason and his girlfriend Kym were also there so it was a big happy family event.

Sister Marian and brother Rob with yours truly. Yes I had a glass of wine. Just don't tell Dr Peter Hopkins.

From the left, sister Marian, Janyne, brother Rob and his wife Maureen and yours truly.

Yesterday the interstate visitors were due to come back and spend the afternoon with us. Janyne was going to take them for a tour around Hope Island Resort on our golf buggy but the weather set in so they ended up visiting for a couple of hours. This time my younger sister, Theresa, and her daughter, Leah, who I haven't seen for years, accompanied them. They live in nearby Currumbin. Naturally there was a lot of chatting about old times and I thoroughly enjoyed myself.

They all head off home to Sydney (and Melbourne) tomorrow but I am sure we'll see more of each other in future. Have to admit I have never been very close to my extended family but I guess major health events such as lung transplants do make us realise the importance of family ( blood thicker than water and all that stuff). We won't be living in each other's pockets but more regular contact will be fun.

Today we also started the ball rolling with the establishment of a more formal organisation representing lung transplantees, principally in the areas of research about what organisations and activities already exist at The Prince Charles Hospital to ensure that we are not re-inventing the wheel. Janyne and I came away from these discussions with the view that proceeding would be very worthwhile for both current and prospective Lung Transplantees and their close relatives as well as providing support to the transplant medical team where required. We have names of other members who may be interested in being involved in the establishment period and I will be seeking meetings and discussions with them over the next couple of weeks.

We'll keep you informed of progress but if anyone has any ideas I'd welcome them. Just hit the "comments" button below and email me your thoughts.

Tomorrow, we start getting the water feature underway. Everything is ready to go as far as the physical feature is concerned but I am sure there'll be some hurdles with Hospital administration in relation to its position and installation. I don't want this thing tucked into a far corner of the hospital grounds where no one will see it and therefore no one will make a wish and help us raise funds. However, we have some good support amongst hospital staff and even the Health Minister for Queensland, Mr Stephen Robertson, was very supportive at the presentation last Friday, so I'm sure we'll get the job done.

I have waffled on for long enough now so I'll say goodbye. I'll talk again soon.

Ben

Some photos of our newly clipped "god dog" patch and his "mother" Suzanne to leave you with. (He's cute and we can give him back after a nice day's doggysitting)

Home again after a big week

2006-09-24T12:34:00.000+10:00

It is amazing how fragile we transplantees can be. A small mistake with medication post hip replacement, and suddenly my body starts the lung rejection process. Quick action by the wonderful transplant team at Prince Charles Hospital and here I am home again on the way back to normal. It'll take a few days still but vital statistics look good.

It was an eventful week with Friday being the tenth anniversary of the Prince Charles Hospital Queensland Lung Transplant Unit. As I was now an inpatient, I joined the celebrations at the hospital with a morning tea attended by over 100 people including present and past members of the Queensland transplant unit as well as a large number of transplantees and their families. The State Minister for Health, the Honorable Mr Stephen Robertson, also attended and I think he was both surprised and impressed with the order of events and the camaraderie that exists between medical staff and patients. It is very much a big family.

I was honored to be asked to make the presentation of the gift from transplantees and from some of their families whose donations were gratefully acknowledged. In all some $3,000 was raised, an amazing result considering there are only some 60 - 70 transplantees still living since transplants began in Queensland (out of about 110 operations). This should cover both the cost of the fountain and installation. Sincere thanks to Eleanor Kerr, social worker at Prince Charles, fellow transplantees Glenda Murray and Phil Griffiths as well as my wife Janyne and children, Paul and Jacqui, without whom this would not have happened.

Here we have two of the transplant team members, Dr. Fiona Kermeen (left) and Dr Peter Hopkins, both of whom look after me so well, accepting a token of the gift to come. It has a replica of a plaque on the left hand side and a photo of the water fountain on the right. Unfortunately the quality of the photos isn't great but I am sure you get the picture.

Guess who? Not bad for a guy with a crook hip and mild lung rejection ????

The plaque says, "Celebrating The Tenth Anniversary of The Prince Charles Hospital Queensland Lung Transplant Unit Donated with Gratitude by Transplant Recipients, Families and Friends, 22.09.2006".

In my presentation I made reference to my thoughts of creating a more formal group or association made up of existing and prospective lung transplantees and maybe their families and friends with a proper committee and better organisation so that future events of this nature can be more efficiently managed. There is no pre-determined agenda here as this will evolve with time and consensus but some broad aims could be to provide moral and, if possible and appropriate, financial support to past and prospective transplantees and their immediate families, raise funds to assist the transplant team in whatever way is deemed appropriate, create greater awareness of the benefits of being an organ donor, organise some fun tours and events etc (after all, life after transplant should be fun), and generally keep members informed about how to get the best out of their new lives.

Health Minister Stephen Robertson was so impressed by this idea that he approached me after formalities and stated that, if we can put this concept together, he would pledge up to $3,000 in funding, (based on a dollar for every dollar raised for the gift to the transplant team). This level of support is very gratefully appreciated and I will be writing to his office this week accepting his conditional offer on behalf of the transplant recipients and committing to report on progress.

Over the next few days I will be speaking to various hospital staff to gauge their thoughts and ideas as well as to find out what similar groups of this nature already exist. After all, we need to be mindful that we don't re-invent the wheel. We will also get a feedback form to as many current and prospective transplantees as possible to gauge levels of interest, organise some meetings, seek nominations for a committee, draft a mission statement and develop a constitution. If anyone out there has any ideas or comments in this regard, I would welcome them. We want this to be fun and not too formal but at the same time it may pay us to have the association registered as a charity if we're going to look at fund raising down the track so we need some formality involved.

Keep watching this blog site for details. Thanks again in my absence to my son Paul who does a far better job of all this than I do.

Rejection

2006-09-21T18:08:00.000+10:00

What was meant to be a routine checkup has found Ben back in hospital for at least the next three days. The results of a blood test, as well as the lung function test, taken this morning prompted the transplant doctors to perform a bronchoscopy to discover the cause of abnormalities they'd noticed. Later this afternoon the biopsy confirmed what they had feared; there were signs of rejection.

Initially they are unable to tell what caused it. However, they suspect a mixup in medication, which saw Ben taking 100mg of Cyclosporine instead of 200mg, may have been the culprit. Irrespective of how or why the most important thing now is to get him better. How do they plan on doing that?

The next step is to get Ben hooked up to a Prednisone drip. For those of you who don't know, Prednisone is a steroid that is used as an immunosuppressive. In Ben's case it is vital they kill the immune system which is causing his body to fight against the healthy donor lungs (remember, Ben's body naturally sees the donor lungs as a foreign body). The plan is to administer this type of treatment over the next three days; the chance of success is good, around 85%.

The comforting news is that the doctors believe it will be a success. We're all very confident in them and Ben's ability to beat this and it's a nervous, fingers crossed, wait until early next week when we'll know.

I'll keep you informed!

Paul.

He's Home

2006-09-13T18:03:00.000+10:00

A quick post to let you all know that Ben did return home today as expected. The kidney issue turned out to be a something minor that they're going to keep an eye on. Ben should be good to lose the crutches in around six (6) weeks and by the three (3) month stage he'll be as good as new.

It's good to have him home!

Rebuilding the Man: Day Five.

2006-09-12T21:20:00.000+10:00

Today brought some exciting news. Ben could be out of hospital as early as tomorrow morning if all goes to plan.

Today he successfully completed a number of tests designed to gauge his ability to cope at home without the help of the hospital staff. One of the tests required him to walk up a number of stairs using his crutches. The other was to simulate getting in/out of a car. Apparently he passed with flying colours, after all I hear he is pretty handy on the crutches but still has trouble getting back into bed!

With so much good news we were bound for a setback sooner or later. Yesterday the doctors noticed an abnormality in his kidney function. There is a possibility its nothing or it may be a sign that there is an infection, which could be quite serious. They've done some further tests and we were expecting to know either sometime this afternoon or tomorrow morning.

Fingers crossed it’s all clear!

Time to Reflect

2006-09-11T20:13:00.000+10:00

When I visited Ben on Saturday I noticed a girl sitting by herself in the lobby area of the hospital. As I got closer to her I saw that she was obviously upset and had been crying. It made me think back to the last time we were here and how different our emotional state had been.

To me there is a comfort in having been through the transplant experience. I now know how strong Ben is. It wasn't as though I had ever doubted his strength, or his ability to make it through, but there were times during that period where emotion and circumstance took over. I recalled myself being in the position of that girl. The person tucked away, alone, upset and in tears, trying to deal with the reality of having your loved one on life support in ICU. It's an overwhelming feeling of helplessness that you can't budge and one I'm sure is unique to people in that position.

This time around it's noticeably different. You've endured something so critical and involving and you've made it through to the other side. It's as if this time it's merely a walk in the park, a warm down after already winning the grand final. You're forced to remind yourself it's not, that anything could happen. That the wound could lead to infection or that the hip could pop back out. You remember that Ben isn't just an ordinary person, he's a double lung transplant recipient and that carries extraordinary risks. And that's how life has become; extraordinary.

I look at Dad (sorry it's not that easy to keep referring to him as Ben) and I see hope. I see in him what many people should see inside themselves; the opportunity life is! I'm reminded how close we were to losing him and the miracle a transplant brings. And now, when I see him lying in hospital after receiving a new hip, it's just one last stepping stone to seeing the dream fulfilled. Up until now mobility had been a factor, in a few months it won't be. Imagine how great a gift such as this could be.

When I left the hospital that day I came across a lady we know only as “Joanne's Mum”. Joanne, her daughter, is only 16. She has an extremely rare heart disease that there seems to be no cure. When we first met her she was in ICU after having 8 operations in a period of 4 weeks (if I remember correctly). This time, she's experienced difficulties, blood clots have developed in the arteries that connect the heart to lungs. Her lung capacity is at a shockingly low 30%. This week she goes back into surgery in an effort to save her lungs from collapsing. I don't quite know the details but by looking at her it looks certain she doesn't have long to live. Poor Joanne, a 16 yr old former track champion who it seemed had her whole life ahead of her only to be left with this!

There has been a connection formed between our families. One that could only be formed through the understanding of what each has been through in ICU. It becomes a second family, a community of people you feel for. Ask Mum & Dad (Ben & Janyne), it's not easy for them or the nurses to see former patients come back in. It may be just a routine checkup but there's always the fear it could be something worse, a complication. It's not just the fact you feel for them but it's the reality that next year, next month or next week that person could be you or your loved one. Life can be given and so easily taken away.

So I'd be lying if I said I wasn't nervous about Dad having this operation, I was. Put simply though.. the opportunity outweighed the risk!

Rebuilding the Man: Day Four.

2006-09-11T18:42:00.000+10:00

Another day goes by and Ben's back at it making progress! "No rest for the wicked", as they say. Today he was up and about on his crutches, terrorising his fellow ward-mates as well as the defencless nurses. He has no trouble getting out of bed, it's getting back in that's the hard part. He says it best, "Once I'm up, I'm up." It seems he just waits around for someone to help him back into bed (Janyne, watch out! This will be your role soon!).

On other good news, the pain has subsided as well. He only has limited movement in his left leg so the process of getting himself mobile does cause some pain & discomfort. Apart from the profanities he's doing fine! (Just joking. I haven't heard one single swear word... yet!)

The chest X-Ray came back clear and there are no signs of infection so far. He's vitals, progress and general attitude at the moment are all excellent. Whilst this is to be expected, it does come as a welcomed relief. At this stage he looks set to return home on Thursday, only just a week on since the operation.

Rebuilding the Man: Day Three.

2006-09-10T18:15:00.000+10:00

Ben's up and at them today! Yes, he's been out of bed with the aid of the walker. It seems these exercises are measured by being able to make it to the shower, in which case he was successful today. Much to his pleasure I would suspect, as he was complaining yesterday that the sponge baths really weren't doing it for him!

It's great news though and the more mobile he is the quicker he'll both regain body strength and help the hip heal! The process of healing seems to be a lengthy one. He'll be on his back for the next couple of weeks, only being able to bend over to an angel of 45 degrees. After the 6 week period this will stretch to 90 degrees for around the next 3 months. He'll have to be very careful how he interacts with normal tasks, such as getting into bed or sitting in a chair. If he bends past a certain point the hip could pop out resulting in another operation. It's not like a dislocation where they can simply "pop it back in".

I won't get into the nitty gritty of it, there's far too much to remember. That is why they're sending out an occupational health worker to assess the house. They'll check everything from the height of the bed to the access in/out of the shower, etc. They'll then make recommendations on what might need to be done in aiding Ben further mobility around the house.

On top of this he won't be traveling as a passenger in a car for the first 6 weeks and it's another 3 months until he'll see the drivers seat. He's getting rid of the Porsche though, so now he might look at driving as a chore instead of a pleasure - it might not be so bad being chauffeured!

Okay, enough of the banter and back to Ben! He had a rather rough night due to, again, another meal mixup. Last night the chicken broth he thought was gluten free, actually contained gluten. Remembering that Ben is a celiac, it's suffice to say he didn't have a pleasant evening.

Tomorrow sees a return to the normal staff roster which means more physio. Hopefully he'll be having two sessions rather than the one a day he's been seeing so far. Again, just to make the point, mobility is the most important thing! He's also due for a chest xray (to make sure those lungs are still doing well) and a few other bits and pieces as well. All in all he's traveling just as expected. It's a relief to find out this isn't the two steps forward, one step back, type recovery the transplant seemed to be!

Rebuilding the Man: Two days on.

2006-09-09T18:02:00.000+10:00

As suspected Ben is feeling a lot better today. It turns out he was supposed to have had a liquid meal, instead of the regular meal, for dinner last night. This would have contributed to the nausea.

The pain has subsided from yesterday. He's off the morphine drip now and just using panadol as pain management. There is still pain however, it's nowhere near as bad.

They've made him get out of bed for the first time post operation. He was standing with the aid of the walker with the plan to make it to the shower. Due to the diziness he was experiencing he wasn't able to make it. Apparently this seems to be the case with most of the patients. He'll try it tomorrow, hopefully with better results.

There was some concern before the operation about how Ben's lungs would hold up. Operations such as this put a huge toll on the body and considering he has only just had the lung transplant, there was sufficient (albeit minimal) risk involed. At this stage he looks to be doing fine. His vitals, whilst a little higher than normal, are standard for this type of patient and there have been no signs of infection (the primary worry) at this stage.

Tomorrow he should be up and walking around. =)

Rebuilding the Man: A day on.

2006-09-08T17:57:00.000+10:00

Ben was in quite a bit of pain today after having the hip replacement yesterday. He is also suffering from nausea which doesn't help. There are two (2) other hip replacement patients in his ward who suffered from the same thing only to come good the day after. Let's hope he's in the same boat.

Reminder: 10th Anniversary Donations

2006-09-07T16:19:00.000+10:00

Just a quick reminder that donations for the 10th Anniversary of the Queensland Lung Transplant Unit will need to be in soon. The ceremony takes place Friday 22nd September, just two weeks away!! You can now make donations by direct debit on the details below. Jacqui and I both made our donations today. It's a great feeling knowing you're doing something for such an important cause. Thanks to all of you who have made donations thus far!

Bank: Credit Union Australia
Acc: The Lung Transplant Account
BSB #: 804050
ACC #: 30333222

Paul.

Rebuilding the Man

2006-09-07T15:00:00.000+10:00

For those of you who didn't know, Ben's back in hospital this week undergoing a hip replacement. I (Paul) will be taking over the reigns, filling you in on how he's progressing for the short period until he gets back. He's been through a lot lately, first receiving the lung transplant and now the hip replacement. In a few short weeks he'll be a totally new man, hence the title - "Rebuilding the Man".

The operation was scheduled in for 9:30am this morning, Thursday 7th September. However, as we're beginning to learn, nothing ever runs on time in hospitals and the operation was further delayed until 11:30am. After already being apprehensive and quite nervous about the operation, I could only imagine how agonising those two hours could have been. None the less it did take place at 11:30am and an hour and a half later Ben was in recovery after an incident free operation.

When I spoke to Janyne last (around 2pm) Ben had just been wheeled into the ward from recovery. He's currently doing well, on 5L of oxygen and about to be hooked up to the humidifier. He'll be on oxygen for a couple of days and most likely they'll have him up and walking in the morning.

Typically, I sent a barrage of questions down the phone line trying to get every piece of detail I could, so here goes. Ben, like every other hip replacement patient, is on oxygen to ease the pressure put on the lungs. It's common procedure and has nothing to do with the fact he has had a lung transplant. The humidifier is used to keep the lungs moist in order to encourage any flem to be brought up, decreasing the risk of infection. As you may of guessed, fighting infection is one of the top priorities given the fact that Ben has a low immune system (a result of the anti-rejection drugs).

Much to Ben's dislike the anesthetist opted for an epidural over the general anesthetic. In short an epidural requires the patient to be awake and semi-conscious during the operation, not a very pleasant thought considering the nature of the procedure. After only having the lung transplant four months ago, Ben's lungs are still quite fragile. A general anesthetic would have required him to be placed on a ventilator however, due to the amount of pressure (10 times that of your normal breath) and his fragile lungs it really wasn't an option.

It turns out the epidural wasn't quite as bad as he thought it would be (he did threaten once that he wasn't going to have the operation unless it was a general anesthetic). They paralyse you throughout the procedure and as a result there was next to no pain and only slight discomfort at times. In recovery he slowly started to regain feeling/movement in his body parts, all except for his toes which are only just coming back to life now.

In short, it all seems to have gone well. I'll keep you filled in as I hear more. To finish I'll leave you with Ben's comment to you all - “It wasn't as bad as what I thought it would be.”

Paul.

P.S. The phrase “It's never as bad as you think it'll be.” has somewhat been Ben's mantra throughout his life. Whilst facing something we were apprehensive about, it always seemed like a nice reassurance that it'd all end okay and usually it did. Nowadays he has changed it slightly with an addition to the end, “Unless it's a double lung transplant, then it's worse”.

Four months on

2006-09-04T18:06:00.000+10:00

Today, 4th September, it is exactly four months since I received my new lungs and I must say that I am still amazed at how well I feel. Given the tragic death today of Crocodile Hunter, Steve Irwin, it just brings home the fact that we can leave this earth at any time regardless of status, age, or creed so we must make the most of every day.

Feeling a tad nervous (make that "very") as I am back in hospital on Wednesday afternoon for hip replacement surgery on Thursday morning. Countless people have assured me that, compared to my lung transplant, this should be a breeze, yet I am feeling more anxious now than when I was being wheeled into the operating theatre for that. I guess I have had more time to think about it. Anyway, I will try to adopt my old adage that "nothing is as bad as it seems" and find myself feeling fighting fit in a few weeks.

Thank you to all who have contributed to the tenth anniversary gift, particularly to the relatives and friends of transplantees (thanks Rob and Liz). We have finally decided to purchase a fountain (read "wishing well" - YES we've gone the full circle). We managed to find a beautiful example and when the retailer found out what it was for, he reduced the price from $3,300 to $2,500. I think we'll exceed this sum by 22nd September so should have enough to cover the cost of a plaque and installation. We hope to place it in the lawns abutting the new wing currently being constructed at Prince Charles Hospital and use "wishing" coins to fund ongoing transplant and organ donor awareness. I'll get some photos to you in the next couple of days.

Rebecca, thanks for your email clarifying your medical condition. I am guessing that you live in the US and I trust medical technology there will find you a drug which will halt the fibrosis and give you and your daughter the opportunity to take that trip to Europe. I think of you often and hope things improve soon.

This is me with our neighbour's new puppy, Patch. He is a great little dog and we love "doggysitting" him when Suzanne goes out but I don't think I am keen to have one of our own as yet. The good thing is we can give him back at the end of the day. However, Janyne still misses Selby terribly so we may revisit this issue when I am fit and well again after surgery.

Time goes by so quickly and I keep forgetting to update this blog as often as I should. Paul will, no doubt, keep you abreast of my progress post hip replacement until I am back on deck in a week or two.

In the meantime, take care.

Ben

It's a small world

2006-08-20T17:23:00.000+10:00

I just had to tell you this.

Since I was referred to Dr Peter Hopkins, consulting lung physician at Prince Charles Hospital, back in September last year, there have been quite a number of coincidences involving him. First, his wife Danene is a general practitioner who works at the same surgery as my GP, Dr John Golder, the doctor I have been seeing for 18 years since moving from Melbourne in 1987. Peter and Danene's baby Jessica was originally due on my birthday, 1st June, but arrived via caesarian section on 30th May.

Second, since my surgery on 4th May, Peter has seen my son Paul at the Woolworths Supermarket at Bulimba, a suburb of Brisbane.(Paul didn't recognise him with his street gear on).

Then just a few weeks ago, Peter saw both Jacqui and Melissa, who was visiting from Melbourne, in Oxford street Bulimba but Peter was too embarrassed to say hello as he was in his gardening clothes.

Only yesterday, Paul met a lady on the Esplanade at Labrador on the Gold Coast and through a casual conversation discovered that her husband is a patient of Peter's and is awaiting a lung transplant.

Finally, and this is a true story, Janyne went for her regular bike ride this morning to the Hope Island Golf Clubhouse where she has breakfast with her friend Suzanne. Suzanne had her new puppy with her and some of the golfers came over to have a look. In conversation, it emerged that one of the men was visiting from Sydney to play golf for a few days and it turns out that he is Danene's father, Peter's father-in-law.

Is this an omen or is this Peter's covert way of keeping a watchful eye on my recovery process and making sure I'm behaving myself????

Just for good measure, Dr John Fraser, another consultant at Prince Charles Hospital, has a three year old son. And his name is.......? You guessed it, Benedict John, the same as mine.

Life is full of coincidences.

Bye,

Ben

Back so soon?

2006-08-18T15:14:00.000+10:00

We had our two nights at the Sheraton in Noosa, courtesy of Jacqui, on Tuesday and Wednesday of this week. Caught up with George and Wendy from Tassie who were there for the Taxation Institute Conference. Had a great time and the weather was just magnificent. We would love to have stayed longer but holidays will have to wait until some other time.

Received an email from Rebecca who has suspected obliterative bronchiolitis (refer my 9th July post) apparently resulting from her rheumatoid arthritis. I had always thought OB was a common condition following lung transplant and didn't realise it could develop through other medical conditions. I am actually trialing a new drug, everolimus, which it is hoped will prevent or manage this condition. I am one of about 400 transplantees worldwide on this trial program. We won't know for a few years but, if it works, it could mean that, barring complications such as rejection or infection, lung transplantees could go on living for a very long time. Rebecca, thanks for your comment. Perhaps have a chat to your lung physician about this new drug. I wish you well.

We are receiving a very positive response to the fundraising flyer seeking support for a tenth anniversary gift to the Queensland Lung Transplant unit with $400.00 in so far and many promises of more. Considering it's been only a week since the flyer went out, this is very encouraging. Thanks to my brother Rob for his contribution. He felt a donation was better value than buying flowers for me when I was in hospital and I thoroughly agree. Could be food for thought for some of you out there!!!!

I would love to have some feedback in relation to a suitable gift. We hope to have $2,500 to $3,000 to purchase a "thank you" gift to the lung transplant medical team at Prince Charles Hospital. So far a painting or a wishing well has been rejected and it has been suggested that a statue of some sort might be suitable. Can't imagine a "Venus" or "David" achieving the objectives we're seeking however. The theme of the gift should be the giving of life or "new beginnings" and be an inspiration to those involved in the transplant journey be they surgeons and other medical professionals, patients or prospective transplantees and their relatives and friends. If you have any ideas, please let us know by completing the "comments" section below.

Queensland is having a State election on Saturday 9th September. Could we be seeing a new Premier and/or Health Minister at our 10th Anniversary morning tea?

Talk again soon,

Ben

Hip Hop

2006-08-14T20:31:00.000+10:00

Good evening all.

Had my regular visit to Prince Charles Hospital today. All results were good but I seem to have a cold which, hopefully, won't develop into anything further. My left hip has been playing up quite badly for a couple of weeks now and Dr Peter Hopkins has finally agreed that the time has come for a hip replacement. The condition is known as Avascular Necrosis, a break down of the bone tissue of the femur (thighbone) and the acetabulum (pelvis) due the long term use of Corticosteroids (prednisolone in my case). Anyway, I was referred to Dr Scott Crawford, Orthopaedic Surgeon, and he has me booked in for hip replacement surgery at Prince Charles on Thursday 7th September.

Yes I know I'll feel better in the long term but I have to admit I'm not really looking forward to surgery again just four months after the lung transplant. However, if I don't have it the whole femur could shatter and I'd be in worse trouble.

The artist Peter J Hill, who painted "Lemon Orchid", (refer 3rd August entry) the painting we hoped to purchase as a tenth anniversary gift to the Queensland Lung Transplant unit, phoned me today. He had just returned from a trip to outback Queensland and said the "Lemon Orchid" had been sold but he'd be happy to paint another similar painting if we're interested. I explained we'd decided to raise some money first and then see what we can buy. Somehow I don't think it will be a painting. Pity, because Peter sounded like a really nice guy (you know he's nearly 70?) and he paints some amazing stuff. Take a look at his website (http://www.pjart.com/index.htm).
By the way, I have no financial interest in Peter's business nor am I on a commission.

Flyers to transplant patients, discussing the tenth anniversary and requesting donations towards a gift, were sent out last Thursday (10th August) so we're hoping we'll get a good response. My son Paul designed the flyer and did a fantastic job. Have a look at it here!

On the bright side, Janyne and I are off to Noosa for a couple of days and catching up with some friends from Melbourne.

Yes, the Porsche Boxter is definitely for sale and is advertised at Carsales.com.au. We've discovered we really only need one car anyway and the money could be better used elsewhere. If you know anyone who may be interested, please send details via the "comments" section of this blog.

Talk again soon.

Bye,

Ben

Change of plans

2006-08-06T11:38:00.000+10:00

Back so soon?

Well we've had a mini meeting and decided that we should raise some money first before purchasing an anniversary gift marking ten years since the Queensland Lung Transplant Unit was formed at Prince Charles Hospital in Brisbane. There wasn't much enthusiasm for the painting I showed you in the last update.

We're looking to raise $2,500 to $3,000 which amounts to about $25.00 to $30.00 per transplantee. There is no reason why relatives and friends shouldn't be part of this as they too have benefited from the fact that their loved one is alive due to the efforts of the transplant team. There are also a number of recipients who had surgery interstate but receive ongoing care at Prince Charles.

Glenda Murray is co-coordinating donations. Anyone who'd like to contribute should make cheques or money orders payable to "Lung Transplant Account" and sent to Glenda Murray, 29 Ballinderry Street, Everton Park, Qld 4053.

Until next time.

Ben

Yes, I have been slack.

2006-08-03T13:59:00.000+10:00

Yes, I have been slack and not written anything for a couple of weeks. But as tomorrow (4th August) marks three months since transplant, I felt it was about time I stopped being lazy and started writing. I hope some of you out there are still reading!!!!!

I am pleased to say that healthwise nothing has changed. A bronchoscopy and biopsy (tissue samples) yesterday showed no sign of rejection or infection and everything appears fine. Let's hope it stays that way.

There is an important anniversary coming up on 22nd September, the tenth anniversary of the Queensland Lung Transplant Unit. Somehow Janyne and I have involved ourselves in this.

At a recent support group meeting, it was decided that a gift of thanks from lung transplant recipients to mark this occasion, would be appropriate. The theme of such a gift should be an expression of gratitude to the medical professionals who make transplants possible and to the wonderful support staff post transplant who continue to look after us today, not to mention the organ donors without whom most of us would not be here. After much discussion, it was decided that an original work of art depicting the concept of new life or new beginnings might be appropriate together with a plaque expressing our gratitude.

“Lemon Orchid”, a painting of a Western Australian wildflower by Australian and Mt Tamborine artist, Peter J Hill, (http://www.pjart.com/index.htm) has been put forward as a possible contender.

It measures 90cm x 60cm and is beautifully framed. The picture doesn’t do it justice as the colours are quite striking. As fellow transplantee, Phil Griffiths stated, “the stages of opening of the flowers is able to be interpreted as similar to the phases of life a transplant recipient experiences or even the ray of hope for those waiting for transplants.”

Asking price for this original painting is $3,000 but I am meeting with the artist after 8th August in the hope of negotiating a better price. With about 100 transplantees who enjoy a second life and who continue to benefit from ongoing care at Prince Charles Hospital's lung transplant unit, we are seeking donations of $30.00 or less per head. I know that some may find such a donation difficult but perhaps families and friends could also chip in as a way of saying thank you for saving the life of a loved one.

If anyone else out there wants to make a donation, please contact me by email and I will direct them to the appropriate person at Prince Charles Hospital to arrange it.

The anniversary will be marked by a morning tea to be held at the hospital and unveiling of a commemorative plaque, with as many transplantees, current and former staff attending as possible. It is hoped the Premier, Mr Peter Beattie and/or Health Minister Mr Stephen Robertson MP will attend.

Anyway that's all my news for now. Talk again next week.

Ben Brian

On the move

2006-07-16T17:54:00.000+10:00

This week saw a visit to Prince Charles Hospital on Monday for blood tests to check on reaction to the new trial drug, everolimus. The result was that I had to reduce the dosage to 1 mg morning and night having started at 1.5 mg. On the way home I visited Tim Davis at Marsh Tincknell (former business colleagues) and what I thought would be a ten minute visit turned into an hour. It was great to catch up. We're looking at the possibility of doing some work together (part time of course).

Also popped in to see Terry Howard at Instant Tax Refunds in Beenleigh. He didn't have too much time as this is the busiest time of the year. Anyway, it was good to get out and talk to people again. The weather was wonderful and I drove home with the roof down, feeling great.

Thursday had my usual weekly check-up at Prince Charles and all results were good. Reducing my Cyclosporin (anti-rejection drug) from 250 mg twice daily to 225 mg. Back again this Thursday and then hopefully down to fortnightly visits. What I do enjoy on these visits is meeting other transplant recipients and comparing notes. Gets a bit like the "old wives club"

Janyne and I continue to ponder the future and have been looking at Caravans thinking travel might be a good idea. We saw some great 'vans but I think we've both come to the conclusion that it was great 20 plus years ago but maybe not for us now. By the time we purchase a van and towing vehicle we're up for $100,000 plus. OK, we'd sell the Porsche to pay for it but with depreciation, fuel costs etc, we'd do just as well staying in motels. I guess we're not in love with the caravanning life enough to make such a big change to our lives. Still thinking of selling the Porsche though, so anyone wanting (or who knows someone who might be) a 2004 Boxter S tiptonic in mint condition, give me a call.

Haven't had too many visitors lately as many friends as well as Paul and Jacqui have colds, something I must avoid. However we continue to communicate by phone and email.

It was good to hear from Donna Burnett (Great Southern Plantations Limited) this week as well as Phil Griffiths, a fellow transplantee who hasn't been too well lately. He had the cheek to suggest we get one of those mechanical dogs so that we wouldn't be tied down. Not quite the same Phil!!!!

Always look forward to any comments or response.

Until next week, take care.

Ben

Better late than never

2006-07-09T09:23:00.000+10:00

I'm a bit tardy this week. For some reason I keep feeling it's a day earlier than it really is. Thought we had this week away from the hospital but it was not to be. Some time ago I had agreed to participate in a trial program for a new drug which, it is hoped, will help in the preventon of a condition commonly known as Bronchiolitis Obliterative Syndrome (BOS). This is a type of scarring or fibrosis which affects the very small airways of the transplanted organ in Heart-Lung, Bilateral (Double) Lung and Single Lung Transplant recipients.

BOS remains the largest single cause of death following a lung transplant operation. At present there are no known or effective therapies for the prevention of this condition. Anyway, in order to be randomly selected, I had to go in on Thursday for the usual tests. To cut a long story short, I was selected and am now on the new drug with possible side effects being monitored over the next few weeks. This is the wonderful thing about being given a second chance at life; Medical Science is always finding new drugs or treatments and who knows where that will lead. I could end up living to a ripe old age.

We took the opportunity to visit the Intensive Care Unit where I spent my first 19 days post op. It was like visiting an old home and I felt quite emotional there. Looking at some of the current patients brought back some vivid memories of my own situation just a few weeks ago. Met some of the staff who looked after me, Cathy and Ross being among them. Left them with about two kilograms of chocolates to share as a "thank you". How else can you thank people who've played a big part in saving your life and making you well ?????

Janyne and I are starting to think about what we'll do in the future. As the hospital visits extend to fortnightly and then monthly, we'll have time for travel. It is hard to re-adjust thinking to long term when pre-op, we were planning on my demise within the current calendar year. Life can change so rapidly and so dramatically.

We're still pondering the pros and cons of getting a new dog. We both miss Selby and, whilst he can't be replaced, we do miss the enthusiastic greetings and the wagging tails when we come home after being out. We often think of his personality and talk about the funny things he used to get up to. On the other hand there is the long term responsibility and the "being tied down" that goes with pet ownership. We'll sleep on it a bit longer. Until next week.

Bye

Ben

8 weeks on

2006-07-01T09:38:00.000+10:00

It's now eight weeks since transplant and I'm feeling great. Thursday's hospital visit involved two blood tests, a lung function test and x-ray all showing positive results. Miraculously, we were out of there at around 11.00 am (normally mid-afternoon) with my next visit being 10th July so next week is a free week. Popped in to see my long term lung Physician, Dr Glenn Rice-McDonald on Wednesday. His face just beamed when he saw me. It must be rewarding to see a patient you have cared for for four years doing so well after transplant. Also visited my GP of 18 years, Dr John Golder, and he had the same reaction. Couldn't believe how well I looked. Even his staff commented.

Finishing early on Thursday gave us the opportunity to have lunch with our daughter, Jacqui, and we visited her at work in the city. She works for Great Southern Securities, the company to which I was contracted for about 12 years. Those of my ex-colleagues who were there and who last saw my when I was ill and 105 kilos, were amazed at how much weight I had lost (76 kilos at last count) and how well I looked. Most had only seen me after I contracted the lung problem. In fact everywhere I go people are surprised at how well I look and how much happier and more positive I am.

I feel truly blessed and everyday, privately, I thank the organ donor and his/her family for the gift of life I have. I had forgotten just how well I could feel having been ill for so long and it really is an awesome feeling. Not sure I believe in miracles but when one considers that someone else's lungs are living and breathing inside of me, and one looks at the people, the science, skills and technology that makes such a thing possible, it really is miraculous.

Still want to hear from the GICU people especially the two Cathies and Ross. Hope my "comments" option is working.

Be in touch next week.

Cheers,

Ben

Latest update

2006-06-24T12:02:00.000+10:00

As per Paul's last posting earlier, I got to read all your comments this week, some going back to early May. Thanks to all of you for your kind thoughts and good wishes.

The past week has been fairly uneventful. On Wednesday I had a bronchoscopy at Prince Charles Hospital where they took some lung tissue to check for rejection or infection and generally make sure the new lungs are performing well. I was given the all clear so it was good news. I know that at some point I will experience a setback of some sort, almost all transplant recipients do, but so far I'm having a dream run so, touch wood, I hope it continues.

Watched the Medical Emergency program on channel 7 last Tuesday which included a segment about a lady undergoing double lung transplant surgery. It was just amazing to think that I was in that position only a couple of months ago. In particular I was surprised at just how big the new lungs were and, looking at the scar on my chest, wondered just how the surgeons could fit them in and make them work. The program continues next Tuesday night at 8.00pm and I'm looking forward to it.

Haven't managed to catch up with all the staff at Prince Charles' GICU yet but I'm back for my normal check-up on Thursday so we'll try again then. In particular I want to catch up with Nurse Ross for her Dahl recipe and the two Cathies.

Talk again in a week.

Bye,

Ben

Paul's Sincerest Apologies!

2006-06-21T23:06:00.000+10:00

I've just discovered that comments posted to the site weren't showing up. It's my fault.. I'm sorry! The BOSS is going to kill me.. (just remember how precious life is Dad?!?!)! The good news is they're all back up and Ben (Dad) will no doubt be reading through them all soon.

Whilst I'm writing, I'd like to quickly thank you all for your kind words and well wishes along the way. The blog is not only a great way for us to communicate Ben's progress but to also look back and recollect just how far he has come. Every time I see him now it's a shock, he's doing so well and is really a whole different person. It's still a road we're all traveling though and Ben (an avid blogger now) will keep you filled in along the way!

Thanks Again.. don't forget, next Tuesday 8pm.. part two of Medical Emergency. I've left a comment on Ben's post below.

Medical Emergency

2006-06-18T11:37:00.000+10:00

Forgot to mention yesterday. The TV program, Medical Emergency, on Channel 7 at 8.00pm on Tuesday 20th June, features a woman undergoing a double lung transplant. Might be worth a look if you are interested.

Cheers,

Ben

Latest Update

2006-06-17T16:01:00.000+10:00

Another week has passed and I have to say I'm generally feeling great. Spent most of the week phoning or emailing friends and business associates letting them know I'm back on deck.

Thursday was check-up day at Prince Charles Hospital and all test results were fine. It's a long day because we're up at 5.15am for the hour and a half drive to Brisbane. Usually we don't leave the hospital until around 2.00pm. On the bright side, we got to meet some other transplantees and it's always interesting to swap stories and discuss progress especially at the different stages after transplant. One chap had a double lung, heart and liver transplant eleven weeks ago and he looked and felt terrific. Makes my little operation like a walk in the park. We're quickly becoming part of the "transplant family". Back next Wednesday (21st June) for a bronchoscopy and biopsy to make sure that there is no rejection. Apparently 40% of organ rejections do not show up in normal tests and a biopsy is necessary around once monthly to ensure things are OK.

Still building my strength and the hip is playing up but Dr Hopkins wants to delay hip replacement surgery for at least four months and ideally twelve months if possible. It's a juggling act between exercising and damaging the hip but we're doing OK at present. I am just so happy to be alive and well, a bit of pain is not really a bother.

If Nurse Cathy (dob 18th May) or the other Cathy (Cathy two degrees) is reading this I'd appreciate either contacting me on 0419 725 468 to let me know if she'll be in on Wednesday 21st or email at benbrian@iprimus.com.au. I'd love to catch up with all the wonderful staff in Intensive Care.

Will update again after the biopsy on Wednesday.

Take care,

Ben

Another week already?

2006-06-11T02:07:00.000+10:00

Saturday 10th June 2006

I can't believe another week has passed since my last entry. Continuing to get stronger and used to doing normal things without the need for assistance or oxygen. Have had two visits to Prince Charles Hospital for check-ups and everything is working well. Next visit is Thursday 15th June and I'll probably have another bronchoscopy to "clear the drains" and check everything is OK inside. Should be allowed to drive again after that.

Starting to get that "what to do with myself" feeling. Need to put some plans together. Apart from my daily exercise routine and visits to shops etc., I really need to find something more challenging and constructive. Perhaps I'm too impatient.

Janyne and I are pondering the pros and cons of getting another dog. Concerns about being tied down vs the joy of having one around means we'll probably wait a month or two to see how the new lungs settle in and my hospital check-ups become less frequent.

Talk again next week.

Ben

Ben Says Thank You

2006-06-02T18:29:00.000+10:00

So here I am, just 28 days after a double lung transplant, at home, at my laptop, trying to find the words to describe how I feel. How does one describe the transition from barely able to walk 15 metres with oxygen to being able to ride an exercise bike for 25 minutes twice a day and breathing normally afterwards?

How does one explain the elation at knowing there is a quality life ahead when only a few weeks ago I thought another month or two without a transplant and I wouldn’t survive?

More importantly, how does one thank all the people involved?

First, of course, is the organ donor. The concept of the gift of life, the willingness, on passing, to give over part of oneself so that a complete stranger may live, is so overwhelming that I cannot find words worthy enough to describe the humility, gratefulness and responsibility I feel. Humble because of all the people to whom the donor’s gift may have been directed, I was chosen; grateful, obviously; and responsible, because it is now my responsibility to do everything in my power to protect these lungs and allow them to do the very thing the donor intended.

To the family of this giver of life, you should be so proud of what your loved one has done. Even though I don’t know who it is, he/she will remain in my daily thoughts for the rest of my life. Every breath I take will be a reminder.

Second there is The Queensland Lung Transplant Unit. I hesitate to name names for fear of forgetting someone but in particular I want to thank Dr Peter Hopkins and Dr Keith McNeill and their team who, through following the progress of my illness, agreed just six short months ago to place me on the waiting list and whose care, attention and compassion have helped me through the past weeks and will do so for the rest of my life. Then, of course, the surgical team headed by Dr John Dunning, a man I haven’t even met yet (Janyne has), whose skills have made the transplant possible.

Third is the fabulous staff in the Prince Charles Hospital Intensive Care Unit. There are too many people to mention individually here but the doctors, nurses and wardstaff are so dedicated, so caring, in what must be a very difficult environment. Yet they are always cheerful and doing what they can to keep patients’ spirits up and assist in recovery even to the point of visiting or bringing in food for me. (Not that I have any complaints about the hospital food!!!!). Even the physiotherapists, regarded generally as hard task masters, are genuinely helping to improve strength and mobility which, in turn, aids recovery.

Then we have the ward staff, speech therapists and, of course, Eleanor, our social worker, with whom Janyne has had many a conversation (well, Janyne has had many a conversation with everybody at Prince Charles including visitors to other patients).

Thank you to my brother Tony who flew up from Melbourne for the day to celebrate my birthday. To all who sent well wishes, phoned, emailed or sent flowers. To the Directors and staff at Great Southern Plantations for their valued support.

Finally, I want to make special mention of my family. Paul and his strength and dedication and his innovative “blogspot” website which has kept you all so well informed of my progress and taken a heavy burden off Janyne’s shoulders. Jacqui, who has visited me almost daily despite a very heavy work schedule at the end of the financial year and who, with Andrew, has opened her home on many occasions so that Janyne and Paul wouldn’t have to travel back to the Gold Coast each night. To Jason, and to Melissa, who made the special trip from Melbourne to lend her love and support.

Finally, I want to thank the most important person in my life, my wife Janyne. Her courage, her positive attitude, her sense of humour and her strength in times of some very difficult periods have earned the respect of everyone she has touched including family, friends and hospital staff. This at a time when our beloved Selby had to be put down, and after four years of caring for me during my illness. There are no words that can adequately express my gratitude. But I will do everything I can to ensure that she shares in every aspect of our improved quality of life and that our years ahead will bring her the happiness she deserves.

Ben

Wednesday - He's Home!

2006-05-31T15:28:00.000+10:00

I just spoke to Ben on the phone as he was travelling down the Gateway Motorway on his way home from the hospital! Yes ladies and gentlement.. he's home a day early!

Monday - Could it be the Best Birthday Present Ever?

2006-05-29T13:46:00.000+10:00

Ben's birthday is on the 1st June (this Thursday), for those of you who didn't already know, and it looks like, with a little bit of luck, that he might be released from hospital! The Doctors are confident that if everything goes to plan over the next 2-3 days Ben will be released from hospital on his birthday, fantastic news!

His rehab programme consists of three vital things.. exercise, diet and education. At the end of his stint in hospital he'll have to be self sufficient in these areas. At this stage he's been educated on all things from what to eat, what drugs he is taking and when, what exercises to do, what the signs of rejection/innfection are, etc. This education is vital to him staying fit and healthy and not returning back to hospital anytime soon.

Today his exercise regime increased from 20 mins on the bike to 25 minutes, still both morning and afternoon. He's also doing weights to build up strength in his shoulders and arms. Overall he's seeing the benefits with him commenting that he's much more mobile than he was 3-4 days ago. He's walking totally unassisted (no frame or oxygen) with better stability and ease than he was and in general, he's just not getting puffed out the way he use to. It's amazing to see how far he has come.

Once he leaves hospital he'll still have to return twice a week, both Monday and Thursday for a check up. The visit will involve a blood test, breathing test, chest xray, visit to his consulting doctor. Over time he'll be visiting less frequently as he gets better.

It's great news and as he's getting better life for all of us is finding some nomality again at last. I'll keep you posted on further developments.

Saturday - Best Lunch Yet?

2006-05-27T17:06:00.000+10:00

We awoke to a pleasant suprise this morning with Ben ringing with the news he's being let out for this afternoon. I must admit it did come as a bit of a shock after him being in hospital, mainly bed ridden, for the past three + weeks. It was one mixed with eager anticipation and a worrying decision about where we wanted to go (we're all way too indecisive!).

After umming and aahhing (only a little) we ended up at a nice little restuarant at Redcliffe (Scarborough was it?). Although the food took an eternity to arrive and the service wasn't quite customer focused (to say the least) it was just great to spend the day out with Ben (Dad) without being trapped in by the hospital walls... it was freedom and one that was much enjoyed. The meals were delicious as well! The whole outing lasted from around 12-4pm.

Consider this..

A month ago Ben struggled to walk a couple of metres without being puffed out and having to stop. All the while being hooked up 24hrs a day to oxygen. Finding it harder and harder to do simple little things we all take for granted, such as taking a shower.

And now.. after a major operation, here he is walking on his own, unassisted, no oxygen, walking from the car to the restaurant, up and down steps, enjoying a meal.. all without hesitation. It's great! And although a little puffed from the experience, with him continuing to exercise and eat properly he's only going to get fitter and more capable.

The wonders of modern science!

Friday - Excercise Regime continues

2006-05-26T14:30:00.000+10:00

Mr Fitness is straight back into the excercise regime today after the little break he had yesterday. Everythings going well so it looks like the Bronch helped! Along with this he's eating well and polishing off those smaller portions of food he requested (he's never been a big eater!).

Thursday - Bronch to clear things up!

2006-05-25T14:23:00.000+10:00

Ben's had a Bronch this morning to clear some of the muck out of his lungs. Coughing is the natural way to bring this up however, with new lungs Ben needs to re-train himself to do this as it doesn't occur naturally anymore. The more muck builds up he visibly becomes unwell, so it's best to clean it out and double check it's all ok.

Yesterday was such a big day that he's probably a little tired also. The plan is to take it easy today and recuperate the body to hit it full steam ahead again tomorrow.

Wednesday - Mr Fitness Cont.

2006-05-24T17:48:00.000+10:00

After a little three hour nap Ben was back into it. He did another 20mins on the exercise bike. The previous stint he did the 20mins on oxygen with three small breaks. This afternoon he did it with no oxygen and with no breaks. It just shows you the rate at which he is improving, it's amazing!

Wednesday - Mr Fitness

2006-05-24T14:44:00.000+10:00

I can't get over how quick things are proceeding. It's an obvious sign of just how much he has improved the past few days.

The tracheotomy has come out completely! He's breathing solely by himself with the help of oxygen (2L) when needed. They've also removed the IV line as well.

The fitness regime is moving full steam ahead. He spent 20mins straight on the exercise bike this morning. If there was any doubt about the lungs it's now been squashed with his lung capacity up to 97%. Just think, pre-transplant he was only getting around 27%, absolutely amazing!

He's starting to do more things for himself. Like getting in and out of bed, eating, walking, showering... all these things that bring back the normality of life. It's great to see.

Wednesday - The Home Coming

2006-05-24T09:32:00.000+10:00

Wow.. hasn't a lot happened in the last 24hrs!

It can't be summed up better than Ben can say it himself, "I feel wonderful!". The past two days he's seen a dramatic lift in both physical and mental health. He's feeling wonderful, he's looking great and it's really hard to imagine this man who's doing so well has just come out of a 19 day stint in ICU.

He's talking well and it's given us an opportunity to reflect on his time in ICU and how he sees himself moving forward from here. There is no shortage of enthusiasm to get well. There's an awe inspiring recognition of those who have helped him and the commitment everyone has shown to seeing him get home. He's confident, and I am confident, that he'll be home sometime soon!

The ward is a nicer environment than the ICU. He's sharing it with three other men, one who had a double lung transplant 5yrs back another with emphysema. It's noisy but it's comfortable and most importantly it's another very important step in the right direction!

Tuesday - HE'S OUT OF ICU!

2006-05-23T16:06:00.000+10:00

I just received a phone call from Janyne with some fantastic news... Ben's moving out of ICU and into a Ward as we speak!

Earlier today Ben had surgery to remove the current tracheotomy and insert a smaller tube that will no doubt be more comfortable. After surgery the Doctors commented on how pleased they were with his progress. They signed him out of ICU and he now moves off to a nice roomy, peaceful, ward.

Some more great news is he can talk! The smaller trachi doesn't inflate against the vocal cords, allowing the air to pass through and for him to communicate. He's extremely pleased after worrying he might not be able to speak again.

I'll keep you posted..

Receive Email Updates!

2006-05-23T08:01:00.000+10:00

If you're wanting to stay up-to-date with Ben's progress then opt-in to receive Email updates whenever a new post is added! Use the form to the right titled "Receive Updates" to get the ball rolling.

Monday - Two Steps Forward

2006-05-22T20:21:00.000+10:00

Ben spent most of today on the TP which is fantastic news. The plan for tomorrow is to take out the trachi and insert a smaller tube, yet another couple of steps forward!

He's been getting a lot of exercise, doing laps of the ward and his weights. People are saying he's already looking 10 yrs younger.. you better look out Mum, he'll be a handful in the ward with all those female nurses around! =P

Friday to Sunday - Progress Report

2006-05-22T15:43:00.000+10:00

Ben's been doing extremely well over the last three days. His strength has improved considerably as well as his ability to breath on his own. It's significant progress.

Friday night I witnessed him walking (with the help of the walking frame) for the first time, off the ventilator and just with pure oxygen. It was a brisk walk around the ward, a considerable distance if you compare it to what he was doing previously. He actually did it with relative ease, an amazing and inspirational effort.

Janyne was able to speak to him on Thursday. They do a procedure in which they deflate the sweedish nose on the tracki letting air flow past his voice box and allowing him to speak. Janyne commented how wonderful it was to hear him speak after having to read his lips for so long.. haha, something in which he says we only do right 50% of the time.

They spoke again on Friday (if I recall correctly) and they were lucky to have a 20min conversation. They talked about the operation, what he had remembered, his thoughts and feelings throughout the recovery, etc. It must have been great for him to get it all off his chest. Admist that there were lots of hello's and thank you's to the Nurses and Doctors who have helped him thus far.

His daily progress is amazing, he's looking back to his normal self. When I say "normal" I mean he looks as well as he did 5yrs prior to the transplant.. it's fantastic to see him with such life and colour in his face again! He's obviously, and by his own admission, feeling a hell of a lot better about things.

His strength continues to improve considerably as well. Just yesterday (Sunday) he walked the whole distance to the Cafe unassisted (except for the walker). It's a distance I'd say of over 100m.. something I was excited to hear about. He also enjoyed his first coffee post-transplant as well. Oh no, I'll be in trouble for saying "coffee" without commenting that it was only half a coffee, something he was scalding us for not mentioning each time we told someone!

The big question of course is "When will he be out of ICU?". The answer to that question is "When he's ready!". When that'll be, no one can tell. What we can say is he is making dramatic steps on the road to recovery and whilst it has taken a while, it's probably better for him in the long run. I'd personally rather see him do the hard yards now so he can benefit by not going back into ICU anytime soon, although a risk that is always evident regardless.

It's been an amazing road thus far and it's really exciting to see him doing well. I've filled him in with everyones comments and best wishes to which he was thankful for. He's writing something today so I can post it on here for all of you to see.. so stay tuned!

Just a quick note.. today he's alternating every 2hrs between the TP and the Ventilator with his other vitals being excellent! So keep your fingers crossed that he'll be up to a ward soon!

Thursday - It's Paul's Fault!

2006-05-18T15:37:00.000+10:00

I must apologise, there was an incorrect quote in the previous post. The TP wasn't going to be administered for 2hrs it was actually half an hour every 2 hours, my mistake!

Ben actually struggled a little bit on the TP this afternoon so they've kept him on the ventilator for most of the day. As he's lungs are working solely on their own he's finding some muscular pain associated with breathing. This is something that will improve over time.

Thursday - TP Success

2006-05-18T09:09:00.000+10:00

Ben coped quite well with the TP (oxygen humidifier) yesterday. They're increasing the stint to 2hrs every 3hrs with 1hr being spent back on the Ventilator.

To give you an idea of what a TP actually is I've included this link below to the Fisher & Paykel Healthcare (the brand of product he's on) Web site.

Fisher & Paykel Healthcare - Humidification System.

I believe the next process in wheening him off the Trachi will involve him breathing totally with the TP (no Ventilator). I'll keep you posted on how today goes!

Wednesday - Morning Update

2006-05-17T13:59:00.000+10:00

Ben's doing really well today.. yesterday's day off from exercising has obviously helped him regain his stregth! He was back at it for his morning walk, covering a distance of around 30m or so.

The process of wheening him off the ventilator continued this morning. He'll be on the TP (see Tuesday's post) for 1/2hr every 4hrs. He's handling it well thus far and commented that he's feeling "much more confident" with it than yesterday.

Tuesday - Steady

2006-05-16T17:10:00.000+10:00

Ben's struggling a little today, especially this morning. It's understandable after having such a big day yesterday, notably the extra walk in the afternoon. Rather than overdoing it they've opted to let him rest for most of the day.

They experimented with taking him off the ventilator. Rather than pulling out the Trachi straight away and seeing how it goes, they slowly wheen him off needing it by putting in some stepping stones to measure his progress. Today they attempted to put him on a small machine they nickname the "TP". The TP doesn't provide any PEEP or assisted pressure as such, just the pure oxygen. Unfortunately he didn't feel totally confident with it and only lasted roughly 5 minutes or so. The plan is to try again tomorrow.

Just a few quick things to inform you of... the ventilator is set to Spontaneous (his breaths only) with an oxygen flow of 30% and PEEP of 5. He's doing most of the eating himself with a drip providing a topup each night. Overall his mental state is great!

Dr Peter Hopkins filled him in on the Bronch this morning commenting that his lungs are "looking great".

Although he had a rough morning he's come good this afternoon and it really looks like it won't be long until he'll be out of ICU! We've been passing on all the comments and best wishes which he really appreciates, so thanks from Ben!

Become an Organ Donor

2006-05-16T09:02:00.000+10:00

I'd like to quickly say a few words about the Organ Donor program, something that is particularly close to my heart.

It's important to remember that Ben would not have been given this fantastic opportunity if it wasn't for an organ donor. Over 2000 men, women and children are listed on transplant lists across Australia, many of whom die waiting for an organ to become available. Ben was just one in a list of many and one who fortunately was lucky.

Pulmonary Fibrosis is a critical illness, one that is not curable. His condition pre-transplant was extremely critical. After being on the waiting list for almost 6 months, and his condition deteriorating rapidly, it was obvious that time was something Ben had little of. And then we received the phone call.. something that will no doubt change our lives forever.

Medicare Australia have become quite active in promoting Organ Donor awareness in the recent years, even promoting an awareness week which this year took place on Feb 17 - 24. However, even still the number of registed donors is quite low with over 20 million Australians NOT on the 'consent' list. It is not enough just to say "YES" on your licence, you need to officially register to participate!

I've visited the ICU ward, I've talked to many Doctors & Nurses involved with organ transplants.. I've spoken to the families of recipients and heard the stories myself.. and most importantly I am lucky enough to see the whole process carried out before my eyes with my father, Ben. Being an organ donor is an opportunity to give the gift of "life" to another! What could you do that would be more rewarding?

Register to become an Organ Donor by clicking this link OR by calling 1800 777 203.

Remember.. one donor can save up to 10 lives!

Monday - Quick Update

2006-05-15T20:37:00.000+10:00

Ben's still making excellant progress! Again he started with his morning walk, walking almost three times as far as he did yesterday. He found it a lot easier suggesting that he's definitely getting his strength back day by day.

Just to give you an update on his vitals as I know a lot of people are wondering. His mean blood pressure is stable (and back to normal) at around 70-80. His heart rate is still a little quick but a lot better than the previous days at 90. His PEEP is really low at 8.8, this being his experiatory pressure and relates to the earlier issue of his lungs collapsing. The oxygen flow is also down to 30% which is the lowest we've ever seen it. The ventilator of course is still assisting his breathing however, all the breaths Ben takes show up as "spontaneous" meaning they're all his, which is fantastic!

Todays chest xray showed that the condition of the lungs is still continuing to improve. The issue with the lungs "collapsing" is under control and the inflamation is clearing. Also the secretions are quite low resulting in them not doing a Bronch today and opting to do it tomorrow.

Another small hiccup has occured however, with the xray showing signs of emphysema. Don't be worried though it's not to do with the lungs but rather small air pockets that have formed under the skin. This is something that will disappear as Ben gets more exercise.

This afternoon Ben went for a walk outside again! This time earlier in the day so he could catch this afternoons raise. It's a good point to mention that Ben isn't actually doing the "walking" he's just sitting in a wheel chair however, it gives him an opportunity to get some fresh air and see something other than the mundane ICU ward.

Dr Peter Hopkins visited him again just to reiterate how well Ben is doing. He joked about getting him up out of bed and doing another walk to which Ben replied "okay let's do it!", somewhat to the suprise of Peter I'd say. He's obviously very motivated to get better and out of ICU. It looks like this might happen early next week if all goes to plan, fingers crossed!

Sunday - Another Great Day!

2006-05-14T18:40:00.000+10:00

Ben's doing really well again today.

He went for a big walk this morning, around 15-20 steps unassisted. He's still tiring quite quickly but this will improve as he continues into his daily exercise routine.

They did another Bronch just to check for any secretion build up. It was minimal. The nurse commented that it's looking quite healthy down there at the moment. Again it was while Ben was awake, which is a little uncomfortable on him but allows the nurses to keep him awake without needing to sedate him for the operation.

This afternoon he jumped in a wheel chair and went for a little trip to the front of the hospital (around 100m). It was great to see him outside and after only being allowed 2 visitors at once he was for the first time able to see the whole family.

Another great day. If things keep going on this path than it won't be long before we see him out of ICU!

Saturday - Update

2006-05-13T20:13:00.000+10:00

Ben had a very good day today. His morning Bronch was great, showing only a little build up of secretions since yesterday. Things are definitely improving.

Another first today.. his first proper shower post-transplant. Although he complained about the quality of nurses who accompanied him (haha) it's definitely a rewarding effort! One that's left him looking a lot better as well!

Dr Peter Hopkins met with Ben around 5pm tonight. He filled us in on the progress thus far, commenting that the "lungs are no longer collapsing", which is great!!

Overall his spirits are high and like yesterday he is a lot more lively. His sense of humour wasn't left behind either with him constantly having us in fits of laughter with his antics. It's great to see him getting back to his normal self.

The goal is still to get the ventilator tube out as soon as possible and with his current form it looks like this might only be just around the corner. Fingers crossed!

Saturday - A Room with a View!

2006-05-13T18:15:00.000+10:00

Ben moved out of Bed 9 and into Bed 4 today. Bed 4 is almost the deluxe suite of the ICU. It's a corner room with large windows letting the natural sunlight shine through. A little roomier than the old Bed too!

He's very pleased with the move, now he feels like he's really getting looked after (haha)! Thanks Cathy (the nurse) for making it possible!

Friday - A Night at the Movies

2006-05-12T20:24:00.000+10:00

Ben was lucky enough to snag a TV & VIDEO tonight so that he can enjoy a movie. A more than welcomed escape from the reptitive nature of the ICU. When we left tonight he was glued to the TV watching Entrapment with Sean Connery & Catherine Zeta-Jones.

Thanks to Cathy (the nurse) for making it all possible!

Friday - Another Cardioversion

2006-05-12T10:24:00.000+10:00

Continuing on from yesterday Dr Peter Hopkins has opted to perform a Bronch again this morning, just to ensure that all the muck (secretions) that were cleaned out yesterday aren't reforming and blocking the airway. The Bronch showed a small build up of secretions however, it's 100% better than yesterday.

It's a good point to note that the issue with the "secretions" is only natural due to Ben's inability to cough. With Ben being unable to cough, the nurses perform routine "suctions" which help to clear the muck for him. This will be something that will be resolved after he is off the ventilator and able to learn how to cough again.

Ben's heart is still beating a little quicker than normal, at around 110 - 150. This morning they performed a cardioversion to help fix this. In short it's an electric shock that helps even out the heart rate with out the use of drugs. The drugs they would normally use in this situation may effect the lungs which is why the doctors and nurses have shy'd away from this approach.

The cardioversion worked, bringing the heart rate down from 150 to an even 90-100!

Thursday - Biopsy Results

2006-05-11T18:10:00.000+10:00

Dr Peter Hopkins just informed us that Ben's biopsy results came back clear. There were no signs of rejection or infection at all, just as he suspected. What a relief!

Thursday - Who knew yoghurt could be so good!

2006-05-11T16:39:00.000+10:00

As you may have guessed from the title, it's true, Ben's had his first dose of real food post-transplant. You'd be fooled into believing he always liked it, with him describing it as "Beautiful" when asked how it was.

This is a great step.. first walking this morning, then the Bronch fixing the blood oxygen levels and now he's awake, he's happy and he's eating. I wonder what tomorrow will bring!

Thursday - Great News

2006-05-11T16:00:00.000+10:00

It looks like the Bronch has made a dramatic change.

Ben's the best we've seen him post-transplant! We returned from lunch to find Janyne coming out of the ICU in hysterics, which made all of us breathe a sigh of relief!

He's heart rate is back to normal (around 80) and his blood pressure is great! Overall his whole attitude has improved immensely. It's almost as if he is a completely different man, full of colour, smiling and laughing (as best he can with the Trachi still in) and mouthing words to communicate. He obviously recognises the progress he has made!

Let's hope this good luck continues!

Thursday - Another Hiccup

2006-05-11T10:30:00.000+10:00

We awoke to find Ben had really struggled overnight. He's blood oxygen levels have dropped to a worrying level and they're going to do a Bronch later this morning to see what's going on.

He is looking extremely ill.. very pale and sweating a lot. Whilst unsettling there were some positives in it. He was up and sitting in his chair, getting some movement. The nurse informed us he'd walked around 10 feet or so, unassisted to the chair. Great news however, he looks like he's paid the price for it!

We'll see how the Bronch goes, with fingers crossed that it might improve the situation.

Wednesday - Still in the Woods

2006-05-10T18:00:00.000+10:00

As the title suggests, we're not out of the woods yet. Today was fairly slow with Ben's condition not really improving for much of it.

The doctors had said the chest xrays did show slight improvement in his lung condition so that's a positive point to take from today. His heart rate is still quite high, around a constant 120-130. They're going to administer some new drugs to help combat the higher-than-usual levels.

He's still got a lot of colour in his face however, his general mental wellness isn't the best. He's obviously struggling and the situation is still quite serious. We're keeping him going with words of encouragement, focusing on small goals that will mean alot when achieved. It's slow and steady but as they say "the turtle wins the race!".

Wednesday - He's still awake!

2006-05-10T11:41:00.000+10:00

Ben's up and awake again this morning which is really pleasing to see. He is still quite restless as he begins to undertake another day without any sedation. The ventilator tube is again causing him a lot of discomfort, with it hitting his sensitive gag reflix and causing a choking type feeling. His blood pressure is stable and his heart rate, which was climbing when we left last night, seems to be back under control.

He has a big day ahead of him already having a Bronch this morning. Later on in the day they'll be getting him up, standing and walking, but not until this afternoon.

It looks like today is going to be a very productive day!

Tuesday - Inflammation

2006-05-09T17:50:00.000+10:00

After speaking with Dr Peter Hopkins it was explained that Ben has some inflammation of the lungs. This is quite common and is caused from the doctors handling the lungs pre-transplant. The inflammation is clearing so things in this respect are getting better.

He's Awake!!

2006-05-09T13:14:00.000+10:00

Today Ben's made a very big improvement! He's up and out of bed, sitting in a chair. It really is such a big step considering he has been in bed for the past 4-5 days!

He's condition is stable. At the moment he's breathing by himself with just a little help from the ventilator. He's blood pressue (mean 100-110) and heart rate (11-130) are still a little above normal but due to the fact he's in hospital and on life support, it really isn't that bad.

Mentally it seems he is struggling a little in the new surroundings. Being awake for the first time without sedation is giving him an opportunity to learn what's happened and what's new. He's still slowly coming out of it but with each time we see him, and the encouragement and motivation we are giving him, he seems a lot better!

We're still waiting to speak to the Doctors about the health of his lungs and we'll fill you all in once we know!

It's been a great morning!!

Tuesday - 2 steps forward, 1 step back!

2006-05-09T09:00:00.000+10:00

After speaking with numerous nurses and doctors you begin to realise that this all isn't just an easy procedure where they have you in one minute, out the next! It's clear this is a hard road and that it's going to take some time.

One thing to remember is the "rule" (used loosely of course) they follow in ICU.. "two steps forward, one step back".

If you do the calculation and you break it down into a day, theoretically Ben should be getting one step closer to recovery each day. And in reality that's exactly what's happening. Whilst the path is slow and often agonising, he is progressing, he is doing incredible well and this is both extremely positive and very pleasing!

The Tracheoscopy

2006-05-08T14:00:00.000+10:00

He's gone in for the Tracheoscopy ("Trachi" as the Doctors call it)!

The procedure went through without a hitch! The plan from here is to try and wake him up and mobilise him. This will help the new lungs settle.

Results of the Bronch

2006-05-08T12:00:00.000+10:00

He's had the Bronch this morning. The Doctors have injected a drug that they use on premature babies. The drug, which name I can't recall, helps with babies that have undeveloped lungs. Hopefully this should help "soften" up the lungs which will help him retain the PEEP himself. The Trachi is all go for 2pm this afternoon!

Monday Morning

2006-05-08T10:30:00.000+10:00

Ben's condition hasn't changed. He's still in bed and on the ventilator which is controlling his breathing. The plan for today is to do a Bronchoscopy ("Bronch") which coupled with the chest xray will reveal how the lungs are doing. If the condition hasn't miraculisly improved they'll most probably put in a Tracheoscopy to relieve the aggrivation he is receiving from the tube through the mouth. We'll know more around 12pm.

Sunday - Positive News

2006-05-07T17:13:00.000+10:00

We've justed spoken with Dr Nikki Blackwell about the posibility of doing the Tracheoscopy on Monday. She's filled us in on the procedure and the benefits in having it.

So why does Ben need it?

To put it short (really short!), he needs to get mobile! The quicker they get lung transplant recipients up and moving around, the better the lungs get use to their new home.

The issue we found out about yesterday (Saturday) about the lungs callopsing is quite a serious problem. The Trachi will help Ben to wake up and excercise, thus helping his body recover from surgery as well as giving his lungs time to "loosen up".

Sunday - Rest Period

2006-05-07T12:00:00.000+10:00

Ben's still heavily sedated and sleeping. They've increased the oxygen flow and the level of PEEP in hope that lungs will stay expanded and the PEEP will naturally occur by itself.

He has moments where he is slowly waking up, although once awake he appears quite agitated (most definitely because of the tube down his throat hitting gag reflexes). Once agitated his blood pressure and heart rate start to climb and become irregular. To keep this under control they supply a further dose of sedatives to help calm him.

Although not much has changed in Ben's condition the situation is still immensely positive!